Explicitly Sick

New Episode:

Sarah Ramey

The Lady's Handbook for Her Mysterious Illness: A Memoir

*Life of an Author

*The Wellness Industry

*Narrative In Chronic Illness

*Creativity and Chronic Illness

*Representation

*Writing Tools

Medical gaslighting

What happens when your coping mechanism is removed

Religion and Ableism

being the good friend, daughter, daughter in law, wife.

The exodus of family and friends

How medical gaslighting keeps you from medical care and endangers lives (tiktok nurse)

Job impact of chronic illness ADA needs

Setting boundaries with family and friends when discussing illness

The grieving process for chronic illness

The importance of online advocacy ie keyboard warriors

The cost of health and life goals

Website/Blog, Twitter, & Instagram Handle

Instagram: @autoimmuneabbey

Name *

Autoimmune Abbey

Disorder Info

What is your disorder? *

Chronic migraine, POTS, undifferentiated spondylitis, generalized anxiety, OCD, gluten intolerance, IBS

At what age did your disorder become a daily issue? *

22

Who were you before your illness became debilitating? *

I was a long-distance runner who loved marathons and ultramarathons and felt completely invincible. Although I was always a bit of a sick kid and teen - I had episodic migraine, a dairy allergy that I eventually started to outgrow at around 12, and a long history of painful periods - I took my health for granted. I was only sick a handful of days each month, and I was ambitious, mentally healthy, and had lots of close friends.

What would you do if you were not dealing with your disorder and/or disability? *

I would certainly still be a long-distance runner, and I would also be doing triathlons. I would probably not have lost so many friends and would have a better relationship with my parents and in-laws. I experienced the typical quiet mass exodus of friends and family that many other disabled people also experience upon becoming ill. Thankfully my spouse and a few best friends stuck around.

What would you like people to know about your daily life? *

Chronic illness is isolating, exhausting, and often traumatic. It's really hard to stay mentally healthy when you're fighting daily symptoms but you constantly feel like you have to prove your symptoms to everyone around you. Being gaslighted on such a grand scale, especially by doctors, has a serious impact on a person's health.

What would make living and moving in the world easier for you? *

The biggest thing that would make the world more accessible to me would be less fluorescent lights. Chronic migraine and POTS make me sensitive to sensory overload, and fluorescent lights are impossible to deal with as a migrainuer. I have turned down jobs simply because of the lighting in the workspace. People think my intolerance for bright lights is just a preference, but it's definitely a non-negotiable accessibility need.

Do you have any life hacks? *

Write EVERYTHING down in your phone calendar to help compensate for brain fog. It's a game-changer.

What kind of support do you get from family or friends? *

My spouse and a few of my close friends have been amazing at supporting me through my illness. They are curious about my symptoms and experience with chronic illness, open to learning about ableism and medical gaslighting, and willing to make sure I don't go hungry at social events because of the gluten intolerance. Unfortunately, my family and my spouse's family have not been so supportive. For a while, I tried to be assertive with them about my needs and limitations, but at this point, I'm setting clear boundaries with them - I will not talk to them about my health anymore, beyond just sharing my diagnoses. And of course, like most chronically ill folks, I've lost a few friends since becoming ill.

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

YES. This is what I refer to as medical gaslighting. In my experience, the majority of doctors will begin to doubt my symptoms the moment they realize they don't know how to explain my symptoms or treat them. For example, when I asked my OBGYN about Endo, she did an ultrasound and found nothing. Now she blames my pelvic pain on the fact that "redheads have a lower tolerance for pain." My first neurologist told me my chronic migraine was all in my head. And several specialists have blamed all my symptoms on my anxiety disorder.

How has your chronic illness affected your relationships? *

It has strengthened my relationship with my spouse and a few close friends but has alienated me from most of my family and some friends.

Is there anything you are afraid to tell people in your life? *

I'm afraid to tell them that I'm still grieving the loss of my health and I badly need their support.

What is your best coping mechanism? *

My Instagram advocacy work has provided me with so much comfort, community, and a sense of purpose again. I can't imagine dealing with chronic illness without the Instagram community.

What are you the most concerned about and the most hopeful for in the future? *

I'm most concerned about and hopeful for my future career in therapy. I feel called to the field and I want to specifically work with disabled people and other marginalized groups, like the LGBTQ community and racial minorities. But I'm scared that the stress and exhaustion of grad school may harm my health and that I might fail to complete my degree.

Is there anything you *don't* want to talk about? Is there a subject we should avoid during the Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

Medical gaslighting. It also may be interesting to talk about ableism in religion. I'm an ex-Christian who ultimately left the faith because I found it incompatible with my progressive values and because I got burned by religion and religious people when I became chronically ill.

What makes you energized or enthusiastic? What drains you?

Watching Netflix with my husband, training my puppy, doing disability advocacy work, and going for walks when I'm able to all energize me. Big social events and traveling with chronic illness all drain me.

Any favorite books or shows?

On Netflix: Sex Ed, Working Moms, Stranger Things, Glow; On Hulu: The Great; Books: Carry On by Rainbow Rowell, of course Harry Potter

What is the hardest and/or best lesson your condition has taught you?

That you never know how strong you are or how much pain you can tolerate with a smile until you become chronically ill.

What is the best purchase under $100 that helped your life

The Headache Hat on Amazon is a lifesaver for migraines. I own three now, and I rotate through them on a regular basis. It's a wearable icepack.

EPISODE TRANSCRIPT (please forgive the errors!)

Monica: [00:00:26] Well, "Autoimmune Abbey",

thank you so much for

coming on. And you've filled out this incredible form and I kind of thought I knew, like we're just going to talk about medical gaslighting, and we're definitely gonna talk about that, but you brought up so many really important things in your. Your form, like from like religion and abelism,

Abbey: [00:00:46] which hit

Monica: [00:00:48] the cross hairs.

And, yeah. So where do you want to start? Do you want to start with medical gaslighting or do you want to start with, yeah, I have a list, so anytime I can

Abbey: [00:00:58] evolve it to things to talk to you about. Yeah. Let's start with that. Cause I think that's definitely really important, but the. The ableism and religion is something I've been looking forward to talking about.

And, haven't really talked about on Instagram very much yet, cause I'm not very open about that with a lot of friends and family yet, but it's the thing that's important and harmful. So yeah, we should definitely talk about that too.

Monica: [00:01:24] And if at any time you feel uncomfortable with that line of questioning, just raise your hand and I will switch questioning, like no problem.

but you also had brought up, boundaries and I totally want to talk to you about boundaries. So I guess we'll start with medical gaslighting. Kind of move through. do you want to give just like a quick account of what you have so people know who aren't familiar with you and if you're not familiar with auto immune Abby, I have been stalking auto-immune Abby on Instagram for a very long time.

And then, please go to Instagram and follow autoimmune. Abby. I will refer to you as Abby from now on, but I want to make sure everyone had to get your handle.

Abbey: [00:02:00] Yeah. So, I have chronic migraine, which was, the first illness that I developed, like back when I was 22, I've had episodic, migraine, my whole life, but the chronic part started very suddenly, and inexplicably.

And so that was really disabling for a long time and really my first experience with the gaslighting. and then. Symptoms just kind of started to quickly snowball after that. So then I started having like a lot of the pots symptoms, which I know you also have, so you can relate to how, like, I don't know how odd all of those symptoms seem individually and how like doctors are just like, I don't know what this is, is probably anxiety.

Like. Go see someone else. So, yeah, the pots is really the second thing. And then, undifferentiated spondylitis, which is, an autoimmune disease where your immune system attacks your ligaments, especially in large joints, like the knees and Achilles and back and neck and that sort of thing. So.

So that was the, the third thing. and then of course, along with all of the physical stuff came the anxiety and, I mean, mental illness is pretty much in my opinion, like impossible to avoid when you're like disabled and you don't know how to explain your symptoms. So, so yeah, all that fun stuff came along with the physical symptoms.

So. By

Monica: [00:03:30] the way, if I laugh and someone says that it's at a wrong point, I just need to explain she's the cutest cat on her lap right now. He keeps jumping up and batting and I swear I am not

Abbey: [00:03:39] laughing at anything

Monica: [00:03:40] inappropriate. And if, if you're okay with me putting it up on YouTube, you'll see exactly what's going on.

Abbey: [00:03:45] Yeah, that is so cute.

Monica: [00:03:46] It is hurting. you're right. Like if anyone can figure out how on earth you can get through chronic illness and the diagnosis process without getting a mental health. Issue. I need to hear how, yeah, I will, I will take notes. We could write a book together, but I don't know how you get through that without it.

How did it was that the medical gaslighting that really solidified

Abbey: [00:04:08] that for you? That was really the thing that kind of, I mean, I had always had some anxiety symptoms growing up, but it never became like a disabling. Mental illness like diagnosable mental illness until the gaslighting happened. And that just really like messed with my head.

Like, I didn't know what symptoms I was experiencing were real. And what were psychosomatic. Like I was just constantly doubting every moment of my lived experience with symptoms and that like messes with a person's head so much.

Monica: [00:04:45] And how did that manifest for you? Or do you, with it started with the migraines when you would go in to, did you go to like the, the college health place or did you go to family?

Doctors are

Abbey: [00:04:56] so when I was a kid and I was just having episodic migraines, my pediatrician told me that they were like sinus headaches and he blamed it on allergies and kind of like dismissed it. So I went my whole life thinking like, Having migraines three or four times a month was normal and having chronic headaches was normal.

And then, so when the chronic migraine started, I still, I didn't even know that they were migraines. I just thought like, Oh, I'm having like bad headaches. Then I also feel nauseous all the time. And I didn't like understand what was going on. And then, I kind of started out in the university health system, but then.

Eventually after a few referrals ended up in neurology. And the first neurologist I ever had told me that chronic migraines were, basically all in my head and that migraine drugs are all placebos. So I basically ought to start exercising more and worrying about my symptoms less and like medications weren't going to help me.

Monica: [00:06:07] I don't have words for that one. I just, yeah. Yeah. I

Abbey: [00:06:13] hear you. Yeah. I was.

Monica: [00:06:15] That's the part that people don't get is so insidious is they have the white jacket on, they have the degrees on the wall and you don't know different you're you're pretty much just trained to look at them as an authority figure and nod.

Abbey: [00:06:27] Yeah. Yeah. Only ever been to like one specialist in my life prior to that point. So. I thought that a neurologist would be qualified enough and authoritative enough to, to be able to trust. I mean, it didn't ever even occur to me like that. This is someone I should be skeptical of. And I didn't see the red flags.

I just like took everything he said to heart. I met, like was devastating because I went untreated with chronic migraines for. Probably like eight more months after getting diagnosed before I finally found a new neurologist and she was like, he told you that medications are all placebos. Like we have like 15 medication options that can help get you your life back.

Monica: [00:07:20] If you just think about, like, how scared would you have been if you were having a headache to end all headaches, which could be an aneurysm and you wouldn't go into the doctor because you're scared. Or like, I was told that my parents were told I should be put in an institution because I had a CRPS and they didn't know.

Yeah. It's I couldn't walk or stand. And so they said she's 16 and she can't walk, obviously she's insane. And so they're recommending that IB put. In an institution like that's, that's how intense the, the ramifications of gaslighting and then you don't go in,

Abbey: [00:07:54] right? Yeah. I've been, you, you think that your symptoms aren't worth medical care or aren't real, so you just like avoid the medical system because you don't think you deserve help and that's really damaging.

Monica: [00:08:07] Alright. Right. Yes. And then there's the fear of like the, tic talk nurse that everyone was talking about before, you know, when that was the biggest controversy that was newer for that back then.

and those of us who are on like, opioids and those of us who have like, conditions that could be seen differently.

Like if you get put on the list of you're a drug seeker, that's real world ramifications, your pills get yanked. No one will, will give you medication for anything. So like you have a tick tock nurse. He was like being cute. And trying to be funny and that's like, okay, but now I have chest pains. I have pots.

Do I even go in because my blood work will show opioids in it and what will happen then? Because I'm too young for a heart attack. Well, I'm not too young for heart tech. Now you would be, but yeah, at least I'm old enough that they go, Oh, you are supposed to be sick. It's the good thing of aging into, into chronic illness and disability is suddenly, they're like, Oh yeah, you're old enough for this now.

It's like, thanks.

Abbey: [00:09:00] Yeah. Last spring, I had a bad case of pneumonia and. And I had pleurisy with that, which causes a lot of severe chest pain. And I was like, so terrified to go to the ER. my husband was like, no, seriously, we need to go to the ER like severe chest pain is something that you should always go to the ER for.

And like, this is new and this isn't normal, but I was just like, They're going to call me crazy. They're going to tell me it's all in my head and they're going to send me home and I don't want to waste, you know, hundreds of dollars at minimum on an ER visit that is going to just end with me being told I'm crazy and sure enough, I had pneumonia.

and you know, it was treatable and all that, but yeah, they don't understand that when you constantly gaslit patients that has. Really serious impacts on not only our mental health, but also our physical health going forward. Because if you don't, if you're too scared to seek medical care that can lead to life threatening emergencies.

and just unnecessary sentence.

Monica: [00:10:07] Yeah. I like tell me if you're like this. I always think maybe I'm just crazy, but, Do you ever get like a weird high when the doctor tells you something's wrong and actually shows you the lab results? I was like, yeah. And here I can. I have receipts. You

Abbey: [00:10:19] are sick. And it's like this

Monica: [00:10:20] weird, like, Oh, my God.

Like I almost get happy and then I'm like, but this is a lifetime of pain and there's no treatment for it, but why am I so happy about this?

Abbey: [00:10:29] Yeah. Yeah. I've I felt like tremendous relief. I mean, getting the spondylitis diagnosis and the pots diagnosis was a very long slow process for me and a lot of being unbelieved along the way.

And the moments when I got diagnosed, I was elated. And very soon after, you know, I had to deal with all the grief and the ramifications of finding out that you have an incurable illness. But in the moment when I got the test results, it was like, yes. Now I have the proof that I'm not making this up. It's not hysteria.

It's not all in my head. It's real. and now I can prove it.

Monica: [00:11:09] When I got the Eller stainless diagnosis, you would have thought I got into Harvard. I was sitting in the parking lot sobbing and calling my mother, like,

Abbey: [00:11:17] yeah,

Monica: [00:11:17] It was that excited? Cause I was 36 when I finally got my diagnosis. So I been sick since I was eight.

Like, and my mom had been the one who would tell doctors, no, she's not going to a mental institution and fight for stuff. So like, it was like this weird, like almost like you got into Harvard moment, I was like, we're both so elated that there's actually a thing. And it had a name and it wasn't that we were both crazy.

Like.

Abbey: [00:11:43] And conversely, whenever a test result would come back negative along that process, it, that feels horrible. And I, I remember one neurology nurse telling me, no, you should be happy. Like this means that you don't have a disabling chronic illness. And I was like, no, this just means we don't know what disabling chronic illness I have yet.

Like that one here, just because the test result came back normal.

Monica: [00:12:13] Oh my God. Yes, no, like you said that, and I'm not kidding my chest tightened up. Just remembering that feeling of waiting for them to tell me that I was healthy. Like, I literally felt that chest tighten and like blood pressure go up. Like, I feel like I just read like a tweet, you know, political tweet right there.

Abbey: [00:12:30] It's like, yeah. But yeah, that's. That's when this brutal

Monica: [00:12:35] under discussed things. Like if we were ever going to do a TV show with chronic illness, like we would have to show that like, that's what I wish people would understand and believe is like, well, the doctor's side, but you don't have

Abbey: [00:12:46] this, you should be

Monica: [00:12:47] thrilled.

And it's like, no, this just means that we don't know what it is and how serious it is.

Abbey: [00:12:51] Yeah. They don't understand that. Getting it. Test result is the key to getting a diagnosis and getting a diagnosis is the key to getting accessibility, accommodations, and treatment, and being believed by all your other specialists.

Then it's, if you don't have that, you're just kind of stuck and you just have to wait for it to get worse before you can ever figure out what's causing it.

Monica: [00:13:16] It's a lot of the, the question that we're having in society right now, which is if the gatekeepers don't have the problem they're solving, you have a huge issue.

And to be in the medical world, it would be, it's very hard to be disabled and be a doctor or be a hospital administrator, or like you're finding out with your own job searches, the ADA doesn't go far enough in protecting you for what you need to be in this field.

Abbey: [00:13:41] Yeah. Yeah. That's why I don't include my last name on any of my

Monica: [00:13:46] end.

We will not.

Abbey: [00:13:48] Yeah. On any of my internet advocacy work, I mean, just

Monica: [00:13:52] realize we can't release this video. I was like, I was going to say, we can really say they never could see the cute cat. I'm like, no, we can't sorry. There will be no video of this. My apologies, everyone, I

Abbey: [00:14:02] guess, I guess that could probably be covered up, but.

But I thought that, yeah, next

Monica: [00:14:07] time we'll do with masks and like the whole changing voice thing. But this time we'll just, I'll be the one you saw the cute cat and you're just got to believe me. I do not inappropriately laugh at people. Just take that one as is. So you've been looking for, you, you're talking about like the accommodations that people couldn't make and just kind of pushed off as like eccentric.

Abbey: [00:14:26] So, yeah, this is something that I've struggled. I mean, I'm not working at the moment, but I am going to school now, but, I struggled with this in both my previous job and, and, my education, fortunately now everything's online, so it's not an issue, but, with chronic migraines, like my number one accessibility need is no fluorescent lights, but people think that's just a preference when I.

Talk about that. and they don't understand like, no, these lights are physically painful to me and I won't be able to stay at work all day. I won't be able to stay in the classroom, in person with the slating situation. So you can either allow me to do work in school from home, or you can help me try to make this a little less painful.

So that that was an accommodation that was really hard to get. You would think it would be simple. It's just a matter of like changing the light bulb or like turning off a couple of lights. But, for some reason, people are really resistant to making a combinations for migraine.

Monica: [00:15:34] If for anything. I mean, trying to get, trying to explain to someone who's parked in the disabled parking spot, who's working in the building.

Like not just someone, who's just like, I'm parking here. It's like a person who's working for the building and parking their giant truck through the disabled spots, how angry they will get if you ask them to move. So you can park in a handicapped spot. Insane, like, just, and I'm thinking like for school, it's like you had to go through elementary school, middle school, high school, those are all fluorescent lights.

Yeah. Like

Abbey: [00:16:03] it didn't really become a serious issue until I had . So I was like almost at the end of my first degree. but I chose the job I did out of college specifically because of the lighting situation and the work environment that I was. Working at there. I was like, great. It's it's dark in their workspace.

This job will work for me. Like,

Monica: [00:16:28] I find it so interesting. How many of us who get sick during formative years choose our careers based on illness. I actually had to walk away from the job I wanted because I'm not going to statistics. It wasn't even a health thing. I wanted to be a therapist. I had to pass statistics.

It was never going to happen. So I chose a different path, but like all of us seem to choose things based on like what we think will actually be. What we can do and what already has the setup for it? Like, if you want to push against that and become a doctor, it's going to be so many more barriers. Like,

Abbey: [00:16:58] yeah, I'm actually I'm planning on becoming a therapist.

So, and, and part of that decision was a large part of that decision was based on my experiences with chronic illness and disability. One, I get to make my own hours and my own workspace. if I own my own practice, but too, like I know how dramatic the gaslighting is and April ism is, so I really want to work with disabled, people in the mental health field.

Cause I know there are many of us who go to therapy and who also have mental illnesses. So, so the disability definitely played a huge role in my career choice. Now at this

Monica: [00:17:40] point, It's like, you're going to do some really wonderful things for a lot of people.

Abbey: [00:17:45] I'm excited for it. It's I mean, I, I just want to help people avoid the same level of like anxiety and trauma that I went through when I was in the diagnosis process, because I think it only takes like a couple of people in your life saying, no, you're not making this up.

This isn't psychosomatic. this is real and you deserve medical care to kind of like change. I don't know, to change the way you feel about your illness. Cause I had a friend who was disabled at my previous job, who was the one who told me, like, I think you're having an autoimmune disease. Don't let them tell you that you're crazy.

Like don't give up. And that really like changed my life. So.

Monica: [00:18:34] I'm just wondering if this is the segue into religion or the segue into boundaries and family. I'll let you decide which one you go either way with what you just said.

Abbey: [00:18:43] I guess, like, I guess let's talk about religion max, because I feel like that's super important to me.

so I used to be a Christian and I have now deconverted, and. There were a lot of different factors that played into that. Obviously like politics was a huge one, but, it, it didn't become like, I dunno, faith didn't become impossible for me until I realized how serious of a problem ableism is in Christianity.

And then I was just like, I can't have any part of this anymore. Like, I can't deal with it. And the biggest, the biggest thing that troubles me in Christianity is the notion of faith healing. a lot of people believe that you can, can, and should pray your illness away or other people should be able to do that for you.

And unfortunately that doesn't work when you have an incurable chronic illness. So I got really burned by all of that because, I, I felt like. The Christians, some of the Christians in my life believed that I would be healthy if I just had more faith or was less than full or believed more strongly, that I could be cured.

And that didn't work for me. So. Yeah, that, that, that

Monica: [00:20:08] hits the crosshairs for me. I have a very interesting journey and religious belief in my own family and myself, but I will say that this is not just a branch of Christianity. This is, if you look at kind of like the, The sort of modern goop or Daniella port or these like spiritual gurus right now, it's the same brand.

It's just a branded of, if you aren't joyful, if you aren't committed to your healing, if you are, you know, not drinking these juices that I sell for a hundred dollars a month or a week. Sorry,

Abbey: [00:20:44] juice. And I mean,

Monica: [00:20:46] I don't, I don't knock religion, but I do knock cruelty and I knock, I knock not being compassionate.

And when a religion stops being compassionate and starts blaming the illness, whether that be, you know, these modern day gurus or, and I've certainly had my issues with the faith healing, believe me, we have some very similar backgrounds. yeah. very much. it just, it can be so. So traumatizing when your, your people turn to their faith for, for comfort and for community.

And when that turns on you, that's, that's lonely.

Abbey: [00:21:21] Yeah, it really is. And I just constantly felt like within the religious sphere, my symptoms were blamed on me and very little attention was paid to like, Why isn't there more scientific research and these illnesses that may be curable if we just like put some research money into them.

And I don't know, I just always, I was always thinking about the systemic issues and the, the ableism and the prejudice that was keeping me sick, but all they wanted to talk about was how I needed to just. Needed to just believe that I was going to get better and then it would happen. And, and there that prejudice is biblically based, like in the new Testament, Jesus blames most of the disabilities, he encounters on demon possession.

Monica: [00:22:17] which

Abbey: [00:22:17] ones, once you really start thinking about that, how, how that those. Faith feeling stories are central to the religion. It's pretty hard to continue to stay in the faith as a disabled person.

Monica: [00:22:31] Yeah, I hear you're frozen right now. There you go. yeah, that's a. I have so many, I was raised in two different religions at the same time growing up.

So it was, it was more of a, Oh God, the cat is cute. I'm sorry. It's very hard to concentrate as a very cute cat. I, I'm going to have to post pictures of your animals on the show notes, just so people

Abbey: [00:22:51] don't like, they're like, what is

Monica: [00:22:52] wrong with this woman that she can't stay professional for five seconds?

I can't, by the way, I can't stay professional. but to animals, I can't, I just fall apart. Please do. I'm sorry. I'm trying to bring my brain back on online.

Abbey: [00:23:08] It's so hard because there's so

Monica: [00:23:09] much about Christianity. I deeply admire, like in my heart and soul, there's so much of that message of loving thy neighbor of, of compassion, of radical compassion.

but the mr. Rogers brand of Christianity is kinda like where I'm at. I'm like, this is, this is beautiful kindness and

Abbey: [00:23:26] love and

Monica: [00:23:26] compassion to all, but then there's another side. If someone's using a bronze age text as. The be all and end all without looking at other aspects of the world. And when you can use that to see the, the movie saved.

Abbey: [00:23:41] No.

Monica: [00:23:42] Okay. It's one of my favorite things ever. It takes place in a CA a Christian high school. And I went to a Catholic high school and there's a scene where the girl throws a Bible at the other girl who picks up and she's like, this is not a weapon. That's,

Abbey: [00:23:54] that's

Monica: [00:23:55] kind of the problem. I feel like there's a lot of, not just Christian, but there's a lot of religions that have gotten weaponized against.

Their own members, be it ableism via homophobia. Be it other, other ways that you can, other people like once you can decide that these members of our community, aren't really a member of our community, they haven't hit this purity test that makes them healthy and a part of this

Abbey: [00:24:16] community. Yeah, I completely agree.

And for a long time, I kind of. Looked past those darker, more harmful sides of Christianity, because I was like, Oh, I'm a progressive Christian. And I don't take old Testament. Laws are laws from the apostle Paul as like laws that are applicable today. And as long as I only believe that the compassionate parts of the Bible and the just parts of the Bible, then it's not harmful.

But. It was the moment that I realized like that Ables them is in the gospel is the one part that as a Christian, you're not definitely not supposed to like question. Then I just realized like even the progressive brand of Christianity can be really harmful to, to some people. So that was the moment where it was like, I can't like I can't do it anymore.

I can throw out so much of it, but if I'm now throwing up the gospels too, there's really no point for me to still be in the faith and I feel much better having left it. It's a relief.

Monica: [00:25:31] I will not comment on your religious dirty, but I will say that it's, it's so hard when you get marginalized by your family and by your community.

That's, that's a brutal thing.

Abbey: [00:25:43] Yeah,

Monica: [00:25:44] I think.

Abbey: [00:25:46] That was, that was just something that I like. I can't ever fully forgive that like being ostracized from family that's that's not. Okay. So, so that leads into the question of boundaries. I mean, at this point I just don't, I don't talk about my illnesses to the family members that I know I can't.

Trust to talk about that without being either given unsolicited medical advice, or

Monica: [00:26:19] we're

Abbey: [00:26:19] told to pray more like it's, it's, it's a firm boundary that I've set now. And it really, it stunk tap to do that. But I feel like sometimes some people just don't earn the right to hear that story. So that's the

Monica: [00:26:39] beautiful thing to underline a few times.

No. One's given the right to hear your medical story. No, one's given the right to hear any of your story. That's that's saying that you trust someone enough to share. Yeah. I want to underline that one tattoo it, put it across the sky because you're right. If you start explaining beyond your diagnosis, then that opens the door.

More, a lot of, unsolicited and sometimes very cruel advice and advice put in quotations. It's always the, if you just people.

Abbey: [00:27:10] Yes. Yeah. But unsolicited medical advice was so frustrating. And I finally realized, I mean, I, I don't owe it to them to explain. Oh, I've already tried X, Y, and Z. And it didn't work for me.

And I don't have to like justify my treatment plan to anyone who, who wants to give me unsolicited medical advice or, or tell me if I only did this, I would get better. Like I don't have to justify why I didn't get better to them. I can just say, no thanks. I'm not looking for advice. And then like, move on.

Monica: [00:27:50] I'm so impressed. I'm in my mid forties, I'm just starting to work on boundaries. Like just, you know, if you feel like you've already been rejected by your family and you've already felt like you're on tenterhooks, like you are trying to earn your place in your community, your family, which is like, I've been dealing with my whole life with my family.

The idea of like creating more boundaries is so scary. Like that is, that is hardcore stuff too, to have that bravery to be like, I am actually going to define how you interact with me. Yeah. That is always to find it as care. And I never understood that. Like, there are some people in my life who I know when they're saying, if you just, they, they literally are just scared for me.

And they're trying everything like my mother, I love her. And I know she never means it badly, but you know, up until about two years ago, there's a lot, if you just, but there's also people in my life where I know it's, it's, it's a claw out thing. It is not meant kindly.

Abbey: [00:28:44] Yeah. I found. I mean the way I see it, if someone says, Oh, if you just tried this, maybe that would carry you.

And I say like, Hey, I'm actually not looking for medical advice. I already tried most of the things that you're going to find on Google. If I tell them that, and then they're like, Oh, I'm sorry. And then don't do it again. Going forward. Then that's someone I like. That's someone who didn't mean any harm by it, and I can still trust going forward.

But if I. You know, explain why I don't want their unfiltered advice once I shouldn't have to keep reminding them like again and again and again, like not looking for advice. So

Monica: [00:29:31] I think the difference is this there's the person who genuinely cares about you and is scared for you and thinks that there might be just something they could do to make it better.

And those are lovely people, slightly misguided, but lovely people. And then there's the ones who are either egotists that are going to save you. Yeah. Or there are the people who feel like your disability and chronic illness is an inconvenience to them and they would like that part of your life to be over.

So things get back to normal. Yeah. Yeah. So those are the three camps. I've I've I found,

Abbey: [00:29:58] I completely agree with that. I think that's pretty good summary. yeah, but the people who are, are just ready for you to be not symptomatic anymore, so that. They don't have to deal with it. Those are the ones that are, to me, feel the most hurtful because it's like, don't you understand?

Like this isn't ending anytime soon, I need support. A lot of people really don't understand, like when someone is grieving or going through something, like you just need someone there to support you where you're at and not try to like save you from it or fix it for you. some people are. Good. I understand that.

And some barge

Monica: [00:30:42] that's been a, quite the discussion with my husband and I. About do I want to be saved or do I need to unload and that's yeah, we've come to a place. Actually. It's worked with my kids too. If anyone wants a quick note on how to parent teenagers and stay married, do you want to talk and have me listen, or do you want, my advice has been like the best questions to ask before at discussion.

Abbey: [00:31:02] Yeah, that's a great idea. I usually just tell my husband before we have that conversation, like. I just need to vent and yeah. And I don't need any solutions right now. And I feel like he usually responds really well to that. Yeah.

Monica: [00:31:20] That's, that's actually been the most helpful thing for me is my husband's a tech and that's his job.

If someone says they're complaining about something, it's his job to fix it. So it's, I always have to like, go, Hey, this is, I just need to bitch for a while. Like I just have to let me spin. Especially things like that, that even doesn't have a basis. In fact, usually when I'm spinning from anxiety.

Abbey: [00:31:42] Yeah. I totally feel you the air.

Monica: [00:31:45] Yeah. Yeah. His, his ability to try to talk me down three o'clock in the morning has been, yeah, we also have teenagers, so there's a lot of three o'clock in the morning, me whimpering and being scared. So

Abbey: [00:31:57] that makes sense.

Monica: [00:31:58] Yeah, it's, it's lovely. And, now he's all in my son just moved out. So it's now just him with, with me and our teenage daughter.

So he's, he's learning a lot about just stop, listen to what's being said and just hold it like. That's a crash crash course for him right now.

Abbey: [00:32:17] It's a good skill to learn.

Monica: [00:32:18] It's been my favorite one. My, yeah, that's that's what's kept us out of, out of therapy and married. It's not a divorce court right there.

Sorry. My dogs are going nuts.

Abbey: [00:32:28] that's okay.

Monica: [00:32:29] Yeah. So you'd also talked about like the boundaries with your, like one of the things that always strikes me. And I, you know, speaking as a cisgender white woman queer. Yes. But like just in my own little box that I've, I have experienced them is that there are expectations I grew up with.

Of the kind of woman I'm supposed to be, what I'm supposed to want and how I'm supposed to be as a daughter, a daughter-in-law a sister, a friend, there is like a really high bar of caregiving I'm supposed to give even as a disabled woman. Like how do you handle that with like the in-laws I might in-laws are amazing.

Please. Let me just underline that a million times. My inlaws are at the most. Loving caring and understanding people. I hit the jackpot in Las, but I've talked to a lot of people that haven't, and I really would love your take on like how you handle a new family's expectations. And

Abbey: [00:33:21] I definitely feel the pressure with them.

They, so they are the more, so my parents are not religious and I've had lots of issues with them, Abel, and, but, My husband's parents, they're the more religious conservative side of the family. And they have a lot of like gender role expectations. And I mean, Christianity is a very patriarchal system and they have a lot of expectations for me that I am just not able to fill anymore.

Like I constantly feel like. By even having an advocacy project, I am like ignoring their expectation that I be submissive and sweet and gentle and, non opinionated. I really feel that pressure and that frustration from them that I'm not filling those expectations. And the being disabled only adds to that because you know, I'm not, I'm not the only person in my marriage who was cleaning the apartment and cooking dinner and like, Taking care of the animals.

Like there are most days we split things, very egalitarian lead very equally, but there are some days when I can't do any of those like expectations and he does all of it and he's happy to do it, and it's not an issue for him, but I feel that pressure from them, like every time, you know, they see Erin cooking.

My husband cooking instead of me, it's like, there's just that little bit of like a tension. And I find that really frustrating because those roles are very, I don't know. Very outdated and very harmful to women. So

Monica: [00:35:28] men and, and trans people like there's no aspect, this doesn't

Abbey: [00:35:33] hurt.

Monica: [00:35:34] Right. And if you're looking at a partnership,

Abbey: [00:35:37] a partnership is supposed to be someone

Monica: [00:35:39] who helps shore up your weak side.

And help celebrate your strengths. And that needs to go both ways. If your weakness is I can't clean, then your partner should be like, I'm going to be cleaning right now that shouldn't even be a question like a

Abbey: [00:35:52] partnership is about,

Monica: [00:35:53] you know, you've got each other's backs at all time. Like you should always be able to lean backwards and have someone there.

Abbey: [00:35:59] Yeah. I'm, I'm really grateful that my husband has been awesome at dealing with chronic illness and disability and totally on board for. Like having an egalitarian relationship and also being willing to pour, pull more of the weight than I am when I'm not able to. So I'm super grateful for that, but I wish I wish there wasn't this expectation that, you know, he shouldn't be, he shouldn't be doing that stuff.

He's, he's going above and beyond their expectations for him by ever cooking or ever cleaning. It's just crazy to me that that's still the expectation and the norms.

Monica: [00:36:46] The bar is set so different. Like no one can deny it. Like I haven't talked to my husband about, you know, like his he's amazing, but he doesn't always see stuff because he, he isn't that person, he hasn't grown up with that.

And so I showed him a man's magazine men's life or something like just a general like men's magazine and a general women's magazine. And I just showed them the headlines. I'm like, if you look here, it's all about what you can do for others. How to be a better mother, how to be a better wife, how to be a better friend, how to be a better.

You know, daughter, sibling, whatever, how to cook better, how to clean better. And then by the way, you also need to take care of yourself because then you're not taking care of everyone else. If you're not taking care of yourself properly. And the men's magazine was how to get ripped

Abbey: [00:37:27] steak dinners, you can make

Monica: [00:37:28] for yourself.

Here's some cool culture stuff. Here's some, like it was all about like yourself. It had nothing, nothing to do with like how to be a better dad. Projects you can do with your kids. Hey, this is how you can go on a really good date. This is, you know, how you can take care of someone else, like nothing about taking care of anything else.

And, you know, I showed him like five different magazines like that. And he was like, okay. Yeah, that's, that's pretty brutal. And we're not just fighting against our bodies ourselves or try explaining to our spouse or our own friends. You know, we have a whole peanut gallery that is ready to keep us in check in our roles.

Abbey: [00:38:02] Yeah. Yeah, it seems very unfair.

Monica: [00:38:06] It's it's it gets, I found it got harder as a mother.

Abbey: [00:38:10] Because the expectations

Monica: [00:38:12] for me to be considered a decent mother were light years away. Like if my husband picked my child or our child up from daycare, he was a God amongst men.

Abbey: [00:38:23] Like

Monica: [00:38:25] absolute God if my child and I dropped my child off and she did not have a lunch prepared the way they wanted it prepared.

If her hair was not done, I'm not kidding about that one. If she was wearing an outfit that didn't match, if, you know, there's like a whole list of things, they would just sign by me and be like, and the daycare director actually took me to task for like stuff. And I'm like,

Abbey: [00:38:46] you know, there's

Monica: [00:38:46] another spouse here, right?

Like a healthy one too. Like it's pretty intense

Abbey: [00:38:51] what we're expected to live up to. Yeah. It's very obvious double standard. Like I always get that sense that any time. my husband is observed like cooking or cleaning or doing anything it's that is supposed to be my role. It's like, wow, he's the best man ever.

You're so lucky. Like, I believe you found him and then it's like, it's just assumed that I'm going to do that stuff. And if I don't, then I'm like not a good enough wife or daughter or daughter-in-law

Monica: [00:39:27] I also, that you're lucky. Yes, I am. I found the most amazing, wonderful human to share my life with.

Abbey: [00:39:33] I

Monica: [00:39:34] am super lucky for that, but that I found someone who was willing

Abbey: [00:39:38] to

Monica: [00:39:38] meet me and help fill

Abbey: [00:39:40] in my, my

Monica: [00:39:40] weaknesses.

Oh my God. That's I mean, that's a really kind of cruel space to put things. And also the divorce rates for women who have chronic illness or a people who present as female who have chronic illness is so much higher. The divorce rate is so different for anyone who's female presenting, who has chronic illness versus a male presenting.

It's like 60% for my

Abbey: [00:40:06] illness. Wow. I do remember. I dunno, I just, I remember in one of your previous podcasts, you were talking about how, I mean, kind of that same thing, that same like reverse. I don't know, like the, the unequal expectations and chronic illness. How, like, if a. Man stays married to a, someone with a chronic illness and helps be a caretaker he's seen as like, heroic for doing that.

But it's, it shouldn't be like he does such a major sacrifice on his part for just not leaving someone who's disabled or chronically ill.

Monica: [00:40:48] All you have to do is look up breast cancer, survivor stories, and you will see a whole bunch of, of, wives who have been left at hospitals after their surgery, where they were to serve with the worst.

There is a whole subgroup that you will find

Abbey: [00:41:01] it's,

Monica: [00:41:02] it's disgusting, it's intense. And like someone of might, I won't call it who it is, but some of my own life, her husband who, her ex husband for the last, like 10 years just got injured. She's taking care of him right now. I have never heard that story in reverse.

Not once. I I'm sure it happened.

Abbey: [00:41:18] And if you are that

Monica: [00:41:19] person, I mazal talk to you as bless at B, but, it's not the story we expect. You hear that story and you're like, Oh, that's really kind of her, but it's not a shock.

Abbey: [00:41:28] Yeah. Women don't get congratulated for like, not leaving someone who's chronically ill or disabled.

Can

Monica: [00:41:37] we underline that wine women don't get congratulated, female presenting people do not get congratulated for doing heroic acts or very high level acts that, and I say heroic, because if male first ending people did it, they would be given, standing ovations. There would be newspaper articles. Like that's, that's a big disparity of like the level of compassionate and caregiving we're supposed to give as.

A gender role, like,

Abbey: [00:42:05] and that's damaging

Monica: [00:42:06] to everyone. Like there are so many compassionate, loving, wonderful male presenting people who are, I know a lot of them, they are wonderful and they get shamed for doing that.

Abbey: [00:42:17] Yeah. Well, yeah, like treated like or whipped or something like, like their partner has control.

I don't know, as like controlling them or something just by expecting like an equal partnership or

Monica: [00:42:35] if you just watch kids, like, if you just want, like how we treat like. A, you know, a little boy who is compassionate and caring and the word second associated there with a male presenting child versus like a female presenting child who is like bossy,

Abbey: [00:42:51] right?

Like,

Monica: [00:42:52] not that she's a leader, not that she's strong, she's bossy, you know, and a boy who is drinks is soft and we have to toughen him up. Like this is ingrained and so much. And so many cultures, like it's not. Kind or caring or compassionate or making a better society for anyone? Exodus of family and friends.

Abbey: [00:43:14] yeah. That's I know that that happens to pretty much everyone who becomes chronically ill or disabled, like as an adult or as a teenager. But I, it still shocked me when that happened. Like I. I mean, and I have so many great friends who have stuck around and I'm really grateful for that. And I don't want to, like, I don't know.

I don't want to ignore like how kind and awesome the friends that I still have are, but. All of the people who just kind of like ghost you eventually you've been ill for too long. Like, I don't understand what that's about. Like, I don't understand what I did wrong to, to deserve that if it's just that, you know, being chronically ill makes us less fun to hang out with or less dependable or what, but I really never dreamed that I would.

Just have so many friends kind of like slowly disappear after awhile and family too,

Monica: [00:44:23] that I don't know about you. But do you ever wonder, like how much of your personality is based around singing for your supper? Yeah. Like being entertaining enough for someone to still want to hang out with you, even though you're sick.

Abbey: [00:44:34] Yeah. Yeah.

Monica: [00:44:36] I'm always curious about that.

Abbey: [00:44:37] You feel like you have to make it worth, worth that to them, to stay friends with you or stay close to you by like, I don't know, by going above and beyond, what's normally expected of a friend just to prove that you're worth still being friends with, even with a disability.

Monica: [00:45:02] Yeah. So it was like, you know, we're marked down

Abbey: [00:45:03] goods, like, right.

Monica: [00:45:05] And that's thing that you internalize, like that's, you know, if you, if you are listening and you have not internalized this, please contact me, tell me what I can do. I need the help. But yeah. And the ghosting is almost more curl. Like I've, I've had it both ways.

I had, someone I was, engaged to leave because they couldn't deal with the illness. And they were honest about that. and that was easier for me in some ways, because it's like, okay, there's nothing I can do about the illness. You got to go, ah, that hurts and

Abbey: [00:45:32] that's bad rejection, but

Monica: [00:45:33] the people who just, I thought I would do anything for them.

And I thought they were on the same board and then they're just gone. That was what are you going to call them out on? Like, you know, what are you going to,

Abbey: [00:45:45] and it's hard to even know for sure if it was the illness that made it happen or was it something else? Cause they never really. Yeah. I don't know.

They never explain why they disappeared and it's, I'm left to assume that it was probably because my needs have changed and I'm a different person now because of the illness. But, it still hurts even if, you know, like, even if you have a feeling. Okay. It's because I'm chronically ill and clearly this friendship is not meant to be because I can't be friends with someone who doesn't, accept my chronic illness, but it's still painful.

And I think that's where I'm having this Instagram account and advocacy project has really like. Helped me a lot, because it's been really great to make friends with other chronically ill and disabled people. cause then I know that they're not going to just stop being friends with me one day because my illness has made me less fun to hang out with or whatever.

and plus being able to connect with people over the internet is fantastic because you never have to leave your apartment or home to do it. I want to do a quick energy check on

Monica: [00:46:59] you cause we hit an hour and I don't want to over exhaust you, but I really want to talk about keyboard warrior. And, if you want, we can move this to another day if you're getting tired, but if you got a little energy and you want to keep talking about that, I definitely want to get into that.

Abbey: [00:47:12] Okay. I'm good.

Monica: [00:47:13] Okay. Yeah. I just, I always want to check on people cause like I will just keep talking and then I'm like, Oh my God, I need to lay down for the next four weeks. so

Abbey: [00:47:21] check in with you.

Monica: [00:47:22] I really want to talk about this because the word keyboard warrior, that's used so derogatorily and that's really upsetting when that's all you have.

Like I'm super into black lives matter. I am super into LGBTQ. Like I like literally, if it's about like protecting someone's right to live and exist happily I'm there. I cannot March I cannot do

Abbey: [00:47:43] this.

Monica: [00:47:44] So like, keyboard is kind of all I've got.

Abbey: [00:47:46] So

Monica: [00:47:47] talk to me about your advocacy that you do online. And let's, let's kind of like start dispelling this idea that like, that's nothing like that really upsets me.

Abbey: [00:47:56] I mean, Having that having social media as a tool to tell your story and to connect with other people is huge when you're chronically ill and disabled, because otherwise, how would I ever meet other chronically ill and disabled people who share my experiences? Because we're not often out protesting or marching or, even hanging out.

And I mean, even in Precoa days, we're not often like going out and I don't know, like having chronic illness, meetups or something, like we're all kind of homebodies. So having a platform to talk and meet other people is just fantastic. and then. The biggest or the most rewarding thing for me has been just, having other people comment and say like, I've experienced this too.

Or like, I can completely relate to this or just share their story, with me, because prior to having this account, I thought that my experience was something unique. And like, it was something about me that was making doctors treat me badly and friends disappear and all this kind of stuff, all this bad stuff that was happening.

I just. I didn't understand that it was something that was universal to chronically ill and disabled people. So I think social media is an amazing tool to connect and to advocate. And it's also been a really great way for me to learn, more about movements like black lives matter and the LGBTQ movement and like be a better ally.

Because I constantly get exposed to perspectives that I've never heard before, because I'm in my little, like Kansas suburbia, rural Buffalo. You are,

Monica: [00:49:53] I didn't know. Yeah,

Abbey: [00:49:56] yeah. Yeah. I grew up in a small town in Kansas. now I live in Olatha, which is a suburb of Kansas city, but I mean, I. I'm still in a bubble even though in the Kansas city area, because I live in like white, relatively wealthy suburbia.

and you know, this, I don't know, social media has been really eyeopening for me.

Monica: [00:50:24] All right. I cannot agree more. Like I live in the Bay area. I live in California. I've, I've always lived in California and I have a bubble in the other way, and I find it really important to not have an echo chamber. So Twitter, while it's one of the worst places I've ever been in, that is a, a place to guard your mental health.

It allows me to see other people's perspectives. It allows me to get other news sources that I don't agree with and that I do like. I can at least look at and say, okay, this is what other people are thinking and feeling, okay, now I've got this and I've been able to follow advocates that I wouldn't have understood that perspective.

Yeah. And that's been really helpful.

Abbey: [00:51:03] I don't have Twitter yet, but I

Monica: [00:51:06] don't know, run, run

Abbey: [00:51:08] away because of that exact thing that you just described, how it's like a definite, mental health, challenge sometimes just because people can be kind of like. Me and on Twitter. and I have, I have dealt with a few like trolls and bullies on Instagram too.

And, and I'm always surprised by how much that like affects my day or my week when, gosh, one time I had some random person just like, it's going to be like seven comments or something long of just like, insults and like. I don't know, like insulting my future therapy, practice, insulting my, disability activism at all, all this stuff.

And so there are moments when like social media, even on Instagram is like, Oh, a little bit scary or a little bit like unkind, but for the most part, Instagram, I feel like it's pretty, pretty kind and pretty gentle compared to Twitter. And

Monica: [00:52:11] Facebook, Facebook is where you go to dislike the people, you know?

Abbey: [00:52:15] Yeah. Like

Monica: [00:52:16] I'm always just in shock at like family members and like people I've known for years and like, this is, this, this you've got, this was saying to publicly say, Oh my God,

Abbey: [00:52:28] I feel you there. Because being from a small town in Kansas, like I. It's the, a lot of super conservative perspectives that I strongly disagree with from people.

I had no idea they were so, racist or homophobic or transphobic or abelist or, or whatever. Like I just, I see a lot of stuff that's like very disturbing, especially right now in the middle of COVID and, The black lives matter movement. Really finally catching the attention of white people everywhere.

Monica: [00:53:06] I can't believe it's taken this long. I can't like I remember the Rodney King riots. I was, I think it was a teenager when they happened. And I remember being shocked because I grew up in a pretty, like, I grew up in a weird area, but I didn't know, like I was taught. Police are always good. Just like doctors, like police, doctors, your teachers.

pastor's like all these people are authorities, I say goes, and by the way, they have your best interests at heart at all times. And Rodney King was such an awakening, for, for me and by, and my parents and the people around us who just had never really thought that this could be a question Mark. And that was decades ago.

How do we like just shuffle that off to the side and stop considering that that was. You know, it's still happening and how are we still making this question in suburbia of, because we can call the police and we can expect to be helped.

Abbey: [00:54:05] Yeah.

Monica: [00:54:05] That other people are yelling at us telling us, no, that's not how that works for us.

If we call the police, we get hurt or killed or arrested. Like why can't we listen to, to a large group of people telling us that this system is only working for one group.

Abbey: [00:54:20] Yeah,

Monica: [00:54:21] sorry. That was my tirade. I'll get off. I totally feel like yelling on Twitter too much.

Abbey: [00:54:26] I've been sitting here wondering like, how did I not understand how bad things were like so much sooner?

I mean, why did it, why did it take all of these videos of police violence for me to really like, understand how serious the problem is that I, I think, I mean, I grew up in a town where we were taught whitewashed history and we were taught that everything, all racism ended after Jim Crow. And everything's great now.

And we're in Kansas that we're on the right

Monica: [00:55:01] side of the racial now.

Abbey: [00:55:02] Yeah. Yeah. That's what we were taught.

Monica: [00:55:05] Oh, wait, that hurts.

Abbey: [00:55:06] I mean, yeah. And I'm only like, in the past few years now starting to comprehend like how far from accurate any of that was and. So I've been trying to like incorporate more black lives matter and black disabled lives matter advocacy into my advocacy work online because I mean, I feel like if we're not, if we're talking about disability, but we're not talking about racism and transphobia and homophobia and all of these other intersecting issues, we're not.

That's really doing the work. but it's, it's messy and painful. And, definitely I feel like that white fragility, kinda coming to the surface sometimes and when I'm challenged on my own privilege. So I'm trying really hard to work on that.

Monica: [00:56:05] And that's, you know, I think there's a big misunderstanding and white fragility of like,

Abbey: [00:56:10] you have to take

Monica: [00:56:11] guilt and responsibility for what people did.

And it's like, what's my understanding of this. And what I've been holding very close is that it's my responsibility to understand the privilege. And it's my understanding, my, my responsibility to see what it was. See who didn't have it. And if I have a

Abbey: [00:56:29] voice or a chance

Monica: [00:56:31] to advocate as hard as I can to level that playing field.

And that's what I keep seeing my family mentioned is things like, I shouldn't feel guilty for slave owners. I wasn't a slave on it's like, no, you weren't. And no one said you were, what we're saying is if there has been a systematic issue of keeping black people, not only from gaining wealth, but the second they did murdering them.

Abbey: [00:56:52] Yeah. And we're still benefiting from that system, even if we're not actively, we don't think we're actively contributing to it. But

Monica: [00:57:02] we are benefiting from it. And that's the important thing to understand. And, you know, you feel, however you need to feel about that. That's a fact, and then you need to work on creating a level, playing field, creating, you know, a sense of fairness instead of a sense of equality.

Like you need to, I may have missed that boat, but it's the idea of like, you give people what they need to get to the point they need to be at. You know, that's going to be different for different groups. Yeah. That's yeah, I've been, I've been on the internet a little too much in the last 48 hours, if you can't tell.

Oh my God. Yeah. That's a, you know, and you're right. We can't leave people behind and that's been the problem with advocacy in the FA, especially in feminism. That's been one of the most dark disgusting parts of the feminist movement is the removal of black and trans people from this advocacy. We can't do that.

Like it's, it's not acceptable, like to say I deserve rights, but you not so much, like that's just unacceptable.

Abbey: [00:58:01] Yeah. What JK Rowling has been daring right now is like,

Monica: [00:58:09] Do you know how much I loved Harry Potter

Abbey: [00:58:12] loved. And now I'm like, you

Monica: [00:58:14] are destroying.

Abbey: [00:58:16] Yeah.

Monica: [00:58:17] But I think that, like I was talking to my, my daughter has no interest in Harry Potter. Like she's totally disgusted. Like her mind is so much smarter. What are we doing? Like, why are we doing this? Like, and, I think a lot of it was that it was a time like when, when that came out, it was one of the first books that actually like gave credit to young people for being intelligent.

Abbey: [00:58:38] Yeah.

Monica: [00:58:39] And it really like was interesting to read and fun to read. And there's a lot of problems with it now, reading it again. I'm like, I missed a lot. I really, Oh man. How did I, how did I miss that? But it was, you know, the thing was, is there, wasn't the large awareness to remind us what we were missing.

Like my husband, I were just watching on my favorite comedy shows. Like I love stand up comedy, never listening to one of my favorite standup comedians of all time. And it's my favorite set. I laugh until my kidneys hurt with a set and they were listening to it last night. I looked at him and like, how did I not care?

I've heard this 50 times. How did I not catch that? And then like we have a 13 year old who reminds us all the time. Like when we're watching a star Wars, the second one, she loved the first one, lay us a badass. Second one. Oh, my God, like what happened? And she was like, that's assault. She said no to him. He pushed his hand against her face there on a spaceship.

Where's she going to go and forced her to kiss him? That's assault, mom and dad. And we're looking at you. They're going. Yes, that is. How did we not, you know, and then we want to be in a Jones, all live Indiana Jones, and we're like,

Abbey: [00:59:49] that's crazy how much you miss? And then now with, I don't know, but with all the access, we have to understanding other perspectives and being more socially aware, it's crazy to rewatch stuff now and be like, wow, that was super messed up. And I didn't even notice. But

Monica: [01:00:09] do you think that part of it is that the bar got raised for everyone, including cis-gender white male filmmakers and producers too.

Like the bar was so low before that it was like, they have a woman and she's not cleaning.

Abbey: [01:00:25] I feel like our bar got

Monica: [01:00:26] raised. So like before we were so expecting something, even though it was bad that when it wasn't like, as bad as we were expecting, we were super celebratory. Yeah.

Abbey: [01:00:37] Definitely.

Monica: [01:00:38] Yeah. What else was I gonna ask?

I had one

Abbey: [01:00:41] other thing before I like.

Monica: [01:00:44] Hi, I'm so sorry. I have not been able to actually keep food down in about four days. So I'm a little loopy right now. So please forgive. no

Abbey: [01:00:51] worries.

Monica: [01:00:52] Oh goodness. What was I going to? Oh, I know the last time I talked to you about, and then if you have anything else, please jump in.

But you had mentioned long distance running, and I was curious how you handle when your coping mechanism got taken away.

Abbey: [01:01:06] Oh, gosh, it was pretty awful for a long time. Cause that was, that was my thing. Like that was the thing I placed all my identity in, and that was my passion. And that was my coping mechanism when I was feeling anxious or sad.

And, it's also the. The way that my husband and I met, we met like at the K U running club and we, like bonded over our mutual love of long distance running. And he encouraged me to run my first ultra marathon, which was, about a month and half before, like chronic illness proper began. So that was pretty horrible, to lose that and like, I for a long time, I had a lot of denial, like I just thought, well, so what's spondylitis, because it attacks your ligaments.

at first it always just seems like a few injuries here and there. Like it kind of, it kind of strikes like one joint at a time at first. And so I kept thinking like, Oh, it's just another injury I need to like. go to PT and like stretch and ice, then I'll be fine. And instead of getting better, it just kept getting worse.

So, I was like devastated when I realized I'm never gonna run another. I'm probably never going to run another marathon again or even another half marathon. at this point, if I can run like two miles without being in severe pain, that's a good, a good. Ron and something I haven't done in a while, so it's tough.

I had to find replacements. So that's why now I walk regularly. and like, I mean, there have been a lot of different interests that have started to fill that void, like the Instagram account, and now having a puppy that fills the void a little bit too, just something new to like focus on and. Put my value and like, and find my identity from, so it was rough.

I remember for awhile, I would tell my husband, like, just don't talk about running to me. I don't want to hear it. I don't want to think about it. And when I would see people running on the road and if they didn't look like they were having fun, I would think like, Hey, you need to like, enjoy what they've got and appreciate it more.

And I was just like angry for a long time, but now I'm finally getting to the point where, you know, I'm past the denial, I'm past the bargaining, I'm past the anger. So I'm sometimes I am like, still really sad about it, but other times I feel this sense of acceptance. And so I kind of went through like all the stages of grief with it, and I'm finally starting to like move past it, but I still miss it.

Monica: [01:04:04] How did the grieving process work for you?

Abbey: [01:04:07] It was, I don't know. I mean, Chronic illness in general has been a long, slow grieving process for me. and I, I feel like I didn't understand that for a long time. I mean, I was in therapy and I didn't even understand like, why I'm so angry or why I'm constantly like, And denial or whatever.

It's like had all these classic grieving stages, but I didn't even understand that's what it was for the longest time, because we, we think of grieving. We think of like losing a loved one, but losing your spells and your hobbies and everything you took for granted is like worth grieving too. So when

Monica: [01:04:53] you are losing a loved one, you're losing yourself so much of yourself.

Abbey: [01:04:57] Yeah. So it was pretty awful and isolating for a long time. But then once I finally started to realize it was grief that I was feeling, then it's like, Oh, okay. So I just need to like, feel this and process it and talk about it and like, understand that it's going to be a long, slow process. And I don't know, Ben, it kind of got easier after that.

Like once I finally realized that's what I was dealing with.

Monica: [01:05:27] And how did, how did you deal once you were like, this is, this is, this is what I'm grieving. How are you? I try to just

Abbey: [01:05:35] work on like letting myself, like, physically feel the emotions, which sounds so obvious. But for a long time, I was trying to like step it down and ignore it and stuff. But. Once I realized it was grief and there was like no way out of it, except to just deal with it.

I started letting myself cry more and like letting myself like punch a pillow when I was angry or like yell in the car, like on the way home from work when no one could hear me. And that sounds really sad, but it, it really helps to just kind of let myself physically like, feel the emotions. And express them, even if it was while I was by myself.

and then it just sort of started to fade away a little bit. Like the more I helped it.

Monica: [01:06:29] it's, Lisa Snyderman, AOL, she's doing an entire, I'm actually supposed to be doing a thing on this, but she's doing a symposium about grief and chronic illness. And I'm like, I'm probably the worst person to ask to do this because I haven't grieved yet and it's been years. And, but it's such an important process at this.

And I think so many of us are like, this is how I'm going to rock it. This is how I'm gonna do better. This is how I'm going to, you know, I I'm going to come out of this. The stronger I'm going to come up with and you might, you absolutely might. But I certainly like the second I couldn't work anymore. I was like, okay, what's my next project.

What's the next thing I'm going to do? Because this is not going to beat me. Yeah. Instead of like honoring what it did beat in me, it did beat some things. It did kill some things. And I never took a minute to like do that because I was afraid I wouldn't crawl back out of that hole.

Abbey: [01:07:17] Yeah. I in my experience, like, it feels it's really, really hard to like, actually let yourself sit in the grief, but like, it doesn't last forever and it will get better.

So I don't know. That's the one thing I would tell anyone who like hasn't really aggrieved it yet is like, Don't be afraid to let yourself feel because it will eventually get better. It just won't be easy and it won't be quick. and you'll probably go through every grieving stage, just like you're losing someone, but.

It does get better. I keep thinking about, I mean, I spent forever in the bargaining stage. That was when I was like, Oh, I'm going to like completely avoid all unhealthy foods. I'm never going to have sugar again. And I'm never gonna like,

Monica: [01:08:10] sorry for laughing. I am so onboard with us. I so hear you.

Abbey: [01:08:14] Yeah. I'm never going to have starch again.

I'm never going to. Eat anything like inflammatory or I don't know anything with histamines. I was kind of on this like autoimmune, paleo mindset where I was like, I just do all of this. I can cure it. And if I do everything perfectly, like, then I'll be better. And. Like eventually, I just had to accept like no amount of dietary restrictions or like lifestyle changes are actually going to cure me.

I just like, this is just part of the process. Like this is just one step in the grieving process. So I, I don't feel that pressure anymore to like, do everything perfectly in order to try to. I don't know, magically cure myself.

Monica: [01:09:05] I hear that. Well, we are almost at an hour and a half. So is there anything that you wanted to hit on that we have not

Abbey: [01:09:11] gotten to?

No, I don't think so. We covered it all. Sorry for keeping you so long.

Monica: [01:09:16] Like I didn't kidnap you. You really didn't have an option. so one last question. What's kind, what's gentle. What's bad-ass in your world. Oh,

Abbey: [01:09:27] Hmm. Well, I feel like right now for me, that thing is our puppy, which I will send you pictures of, but that has been like having a puppy has been an amazing motivation to like, be kinder to myself and be gentle or with others around me.

And to also like, I don't know, just work really hard on something that matters to me, which is like, Training happy, healthy, gentle puppy. So that's, that's kind of been my, my positive focus right now.

Monica: [01:10:05] That is awesome. Abby, thank you so much for being on. I'm sure you are going to make an amazing mental health professional.

I can't wait to see what you end up doing. everyone, we are really creating a network. Jason from discomfort, FM is coming onto the invisible, that brick and networks. So we're going to have multiple podcasts onto invisible, not broken yet. It's getting really exciting. and I think that's about all the news.

I have heard accept that we're starting a magazine and that will be out hopefully September, 2020, and the first issue will be on medical bias. So the submissions will open up next week. If you go to our website, invisible network and.com, we're going to be looking for your artwork. Your stories, your reporting, and your essays.

And please keep the writing under a thousand words. I am doing this on my own and I am sick. So be gentle with me on that. And, can we to put out our first issue of you're really exciting. So until next week behind the gentle and to be a badass, I don't think it's ever been more important.

Social Handles, Blogs, Websites, and Hashtags

www.lauramustard.com

https://www.youtube.com/user/lauramustardmusic https://open.spotify.com/artist/0yoEf2gicVybjO38cQJfmL https://www.facebook.com/lauramustardmusic @lauramustardmusic https://www.instagram.com/lauramustard/ @lauramustard

https://twitter.com/mustardlaura @mustardlaura

Disorder Information

What is your disorder?

VATER Association and Latex Allergy

At what age did your disorder present?

Birth, but latex allergy was diagnosed around age 7 and different catheters/stomas were added/changed over time

What was your life like before your disorder?

It's always been present, but mobility was easier before the indwelling catheter was added this summer, it was also easier to eat before all the cross allergies were known with the latex allergy

What would you be doing and who would you be if you were not managing chronic illness/ disability?

Good question. I think it could be easier to pursue a career as a musician and songwriter without needing amazing health insurance. I have friends who can afford to have less comprehensive health plans or just quit their "day job" to tour for 6 months (pre-COVID obviously). Or can move between jobs easier or have jobs with more flexibility to a degree. I've always felt that I needed that safety net. I am grateful to have a degree and a job with a steady income and insurance, obviously, but at times, it can feel limited with what I really want to do with my life in terms of music. Some of that speaks more to our healthcare system in the US rather than living with a chronic illness I guess. But it just always felt like there are certain rules I need to "play by" that not everyone else has to follow. There's also a big-time management piece in terms of everything I do to manage my birth defects. A bowel management routine and a big list of foods that make my stomach upset have been hard and limiting. In general, I have a pretty good system in place to manage it, but are still days that end up in the bathroom for hours, which can be frustrating. I usually check every ingredient before eating something, and I can still have an issue with a negative reaction.

What would you like people to know about your daily life?

Just all of the work that it takes behind the scenes to pull off the illusion of being "normal". Like I get up three hours before I have to leave the house in order to get ready. I have a bowel management plan, a catheter that needs flushing and cleaning and that's changed once per month. And before this catheter, I was prone to urinary retention, which leads to ER visits. I actually had three surgeries this past summer (in the middle of the pandemic) to put in this catheter and that impacted mobility and just overall comfort for a while (and still does to a degree, though it's improving). It's a bit of an "invisible illness" too in that most people wouldn't know about it if they met me on the street or interacted in the day to day. I always have a bag on me with extra supplies in case my stomach gets upset or I have issues with my catheter. I also have a giant water bottle on me cause I'm prone to dehydration and UTIs so I do my best to avoid that. It's a lot of calculations and planning for worst case scenarios I guess. I also see about 6 different doctors every year and have regular pills/perscriptions and ultrasounds and bone density scans to manage everything, and that's without any extra complications, like the catheter/urinary adventures this summer. And just the added expense that goes to healthcare, doctor's visits and all my regular orders to medical suppliers and CVS to manage everything. Again, it just takes a lot of planning and organization (which are not my strengths, lol) that people don't necessarily see or know about. And this is all going on while I work a full time job and try create a career as an independent artist and songwriter. And I do consider myself very lucky to be able to work and play music, cause I know not everyone with a chronic illness can. It's managing the frustration (and acknowledging that it's okay to be frustrated) while also having gratitude for what I can do, I guess.

What would make moving through the world easier for you?

More understanding and awareness about bowel/urinary disorders. Most people don't know about it and there is a bit of a taboo and negative stigma around any type of incontinence. It made me feel like I had to hide it growing up, which created a lot pf shame that I'm still working through. I only started talking about my medical issues publicly and on social media this past June, so it"s all still a little new being so open. Less of a taboo around it would be nice. Also, if restaurants and food producers would stop using latex gloves, that would make my world much easier. If anything is handled with latex gloves, I can't eat it and it makes my stomach really upset, so that makes eating a lot more limited for me. Lots of phone calls and conversations about latex gloves (which most people have never heard of, so I'm explaining that a lot). Also, everyone wear a damn mask and wash your hands cause I'm high risk and I really don't want to end up in an ICU on dialysis if I get COVID.

Do you have any life hacks? Coping mechanisms?

Journaling and songwriting for me have also been really helpful. And even though most people say I'm a very positive person, my journals are often really negative and not fun to re-read. Just lots of venting. And songwriting helps me process all of that too. And then I think just being aware of what does energize me, like taking walks (though I've needed a walking stick since the new catheter was put in) and playing music. Like when I have days that I'm stuck in the bathroom, lately I've been trying to bring a notebook in there and write songs, which is more energizing than binge-watching Netflix (though my bathroom adventures improved with invention of Smart phones and laptops, lol. Definitely helps to pass the time). Also, support groups online are really nice. I'm in a few Facebook groups for Latex Allergies and VATER Association and it's really nice to be able to talk with other people or read posts about people going through similar things. And even just searching hashtags on Instagram has been helpful. Like as soon as my urologist told me I needed a suprapubic catheter in June, I walked out of her office and searched #suprapubiccatheter on Instagram to see what it was like. And people to post pictures and stories about living with them. That was really helpful to see what I'd be getting into. It provides comfort since growing up I kind of felt like I was the only one in the world with all of these medical issues.

Support from family and friends? Has your disorder affected your relationships?

Yeah, I'm very grateful for the family I have. I kind of felt like I won the lottery with my family. My Mom managed all of my medical routines and appointments when I was a kid. And this was before the internet, so she was very good at self-educating. I remember doctors would always ask her during my appointments, "Oh, do you have a medical background?" And she would just be like, "No, I just learned it all from Laura". She is very organized and would look things up and really have an understanding of what was going on with me. And could pursue other treatment options too. And we were fortunate to always have good health insurance with my Dad's job and them my Mom's job so I was never aware of any financial stress as a kid. My parents and sister are very supportive of it and I still feel like I can ask my Mom medical questions I have. As a speech pathologist who works with children who have special needs, I've seen how hard it can be when families don't have a good understanding of what is going on medically, if there's denial, if they have have trouble managing all the home care and appointments or just have financial stress, and it makes life a lot harder. So I am really grateful for the family I grew up in. As a kid, I did experience a lot of teasing. I had the nickname "pampers" from 3rd grade through about 8th grade, which was not fun. And even close friends I told about my feeding pump in 6th grade were pretty mean about it, so I learned from an early age to be really secretive about my medical stuff. That if I told people outside of my family, it felt like I would be rejected. So I really didn't tell anyone outside of my family about it until college, which in hindsight, helped create a lot of shame around it. And it made dating more challenging. I've had 33 operations, so I have a lot of scars and my anatomy is a little different. And getting to know guys more intimately always brought up questions. And then it felt like I had to have this big "medical talk" with guys. I guess it proved to be a good filter for dudes who were more superficial, but it didn't make the rejection sting any less, especially cause it's hard when you feel like you're being rejected for something you can't control. I had one guy tell his Mom about it and she advised him against settling down with "someone like her cause that medical stuff makes life much harder" and another dude who said "I don't want to deal with this medical stuff my whole life" and those two instances were pretty heartbreaking at the time. Although I think I had a real insecurity in college and would project and say things like, "why do you wanna be with someone like me who has all this stuff" as a way to be reassured, but overtime, I get that it becomes a turn off. But I did realize what I was doing in hindsight and now just try to say, "You know, today I'm feeling insecure about X" instead of projecting it. And now I have a really supportive partner now. We've been together for 4 and a half years. He knows all of my medical stuff and has slept in bed beside me while I had a urinary drainage bag and has driven me to the ER and waited in the waiting room while I've had surgery. He is very supportive, and I'm grateful for that.

Is there anything you are afraid to tell those close to you?

I don't think so. Most people close to me know about all of my medical issues. I definitely try to "ease in" new people who don't know me well and not talk about everything in my medical life and history at once though. And I am getting more comfortable with sharing parts of my medical life on social media.

What energizes you? What drains you?

Music, being outside and dogs energize me. Lately, the news has been draining. But I guess just hard days when my stomach is off or my bladder hurts from the catheter can be draining.

Favorite shows? Books? Podcasts?

Oddly enough, I love medical shows. I think cause it was a way to see my experience reflected back to me as a kid (ER, Scrubs, Grey's Anatomy are prolly my favorites). But comedies like Seinfeld, The Office and Parks and Rec are great too. I love Walt Whitman's poetry. His writing about the body really helped me find more self-acceptance.

Favorite Purchase under $100

Banjo picks and a banjo primer book. I recently started playing the banjo and that's a nice release and almost meditative experience. I got an actual banjo (prolly over $100) for my birthday a few years ago, but picks and primer really got me in a new direction with it.

What is the hardest and/or best lesson your condition has taught you?

The hardest one is probably just impermanence. Before my catheter adventures this summer, I had a stoma that I cathed intermittently, and I assumed I would use use that to pee. And then everything changed and have this catheter that's in all the time now. I'm learning to live with it, but it's a big adjustment. Just what relative stability you have may not always be there, and that's hard. But I do credit my hours as a kid in the bathroom before screens where everywhere as what lead me to start making up stories and later writing songs. I don't know if I'd have the same perspective on life, and thus lyrics, if I grew up differently (without medical issues). I don't know if I'd be the same musician I am today without my medical issues. So to a degree, there is some gratitude because songwriting is my favorite thing and really the one thing that I can lose track of time doing. Ironically, my song "Nobody's Road" that is about my medical issues was the one that was received the best when I released it. And I thought it would be too personal, so seeing people relate to my perspective around something so personal was gratifying. I guess too, it's taught me some resilience.

Any questions you think we should add to this list?

Maybe just, how have your medical conditions impacted your songwriting? Just as a specific music question for me. But all of your questions were awesome

DISORDER INFO

What is your disorder? *

So many! Mast cell activation issue, interstitial cystitis, vulvodynia, fibromyalgia - to name a few

At what age did your disorder become a daily issue? *

43

Who were you before your illness became debilitating? *

Such a great question. Who was I? I was a full-time college professor.

What would you do if you were not dealing with your disorder and/or disability? *

This is hard to answer because, on one hand, I wish I could go back to my full-time working life, but on the other hand, my illnesses have opened up other worlds for me with writing and creativity.

What would you like people to know about your daily life? *

It is much harder than people without chronic illness may imagine. I put on a good show and there are many positives in my life, but it is a struggle.

What would make living and moving in the world easier for you? *

More compassion, understanding, and knowledge - from medical providers and the general community.

Do you have any life hacks? *

Naps! Do something creative! Meditate!

What kind of support do you get from family or friends? *

I am lucky - I have a great circle of support. Many do not.

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

One doctor suggested that the symptoms I had could be explained by psychiatric issues. I highly doubt that a male-identifying person would have been told the same thing. Another care provider seemed only concerned about my weight, as if that was the cause of all my issues. I have to return once a year for ongoing care from that second person, and I dread it every time, but I get the medical equipment I require as a result.

How has your chronic illness affected your relationships? *

Some have been made stronger. Others have lapsed.

Is there anything you are afraid to tell people in your life? *

At the height of my physical pain, it was hard to discuss how I was feeling - physically and emotionally.

What is your best coping mechanism? *

Naps! Reading! Podcasts like this one!

What are you the most concerned about and the most hopeful for in the future? *

I worry that those with chronic illness can be even more isolated during the pandemic. I am hopeful that perhaps chronic illness will get more REAL attention as COVID patients are reporting (unfortunately) long-last side effects.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

I'd like to talk about my first book that came out this spring. I consider it a major life accomplishment, even more because I did it while dealing with chronic illness.

What makes you energized or enthusiastic? What drains you?

Energized = connection with others. Draining = dealing with bigots, people who have not used the pandemic to focus on what is essential.

Any favorite books or shows?

My wife and I missed Parks & Recreation when it was on network TV, but are really enjoying it now through Netflix!

What is the hardest and/or best lesson your condition has taught you?

I am stronger than I ever thought possible.

What is the best purchase under $100 that helped your life

You are Not Your Pain - book with an accompanying CD that provides guided meditations for those with chronic pain, written by those with chronic pain - it helped me when nothing else yet did.

Any questions you think we should add to this list?

Who has been the most helpful to you? Least helpful? And why? What is one thing you do every day, without fail. (What is one thing you WISH you did every day, without fail.) Other than sleep, what do you spend the most time doing every day? What is your favorite EASY recipe that you can make without exhausting yourself? What are you reading right now? What is the best medical advice you ever got? The worst? (I will stop with my stream of consciousness now or I could be here all day!) :)

Social Handles, Blogs, Websites, and Hashtags

www.lauramustard.com

https://www.youtube.com/user/lauramustardmusic https://open.spotify.com/artist/0yoEf2gicVybjO38cQJfmL https://www.facebook.com/lauramustardmusic @lauramustardmusic https://www.instagram.com/lauramustard/ @lauramustard

https://twitter.com/mustardlaura @mustardlaura

Disorder Information

What is your disorder?

VATER Association and Latex Allergy

At what age did your disorder present?

Birth, but latex allergy was diagnosed around age 7 and different catheters/stomas were added/changed over time

What was your life like before your disorder?

It's always been present, but mobility was easier before the indwelling catheter was added this summer, it was also easier to eat before all the cross allergies were known with the latex allergy

What would you be doing and who would you be if you were not managing chronic illness/ disability?

Good question. I think it could be easier to pursue a career as a musician and songwriter without needing amazing health insurance. I have friends who can afford to have less comprehensive health plans or just quit their "day job" to tour for 6 months (pre-COVID obviously). Or can move between jobs easier or have jobs with more flexibility to a degree. I've always felt that I needed that safety net. I am grateful to have a degree and a job with a steady income and insurance, obviously, but at times, it can feel limited with what I really want to do with my life in terms of music. Some of that speaks more to our healthcare system in the US rather than living with a chronic illness I guess. But it just always felt like there are certain rules I need to "play by" that not everyone else has to follow. There's also a big-time management piece in terms of everything I do to manage my birth defects. A bowel management routine and a big list of foods that make my stomach upset have been hard and limiting. In general, I have a pretty good system in place to manage it, but are still days that end up in the bathroom for hours, which can be frustrating. I usually check every ingredient before eating something, and I can still have an issue with a negative reaction.

What would you like people to know about your daily life?

Just all of the work that it takes behind the scenes to pull off the illusion of being "normal". Like I get up three hours before I have to leave the house in order to get ready. I have a bowel management plan, a catheter that needs flushing and cleaning and that's changed once per month. And before this catheter, I was prone to urinary retention, which leads to ER visits. I actually had three surgeries this past summer (in the middle of the pandemic) to put in this catheter and that impacted mobility and just overall comfort for a while (and still does to a degree, though it's improving). It's a bit of an "invisible illness" too in that most people wouldn't know about it if they met me on the street or interacted in the day to day. I always have a bag on me with extra supplies in case my stomach gets upset or I have issues with my catheter. I also have a giant water bottle on me cause I'm prone to dehydration and UTIs so I do my best to avoid that. It's a lot of calculations and planning for worst case scenarios I guess. I also see about 6 different doctors every year and have regular pills/perscriptions and ultrasounds and bone density scans to manage everything, and that's without any extra complications, like the catheter/urinary adventures this summer. And just the added expense that goes to healthcare, doctor's visits and all my regular orders to medical suppliers and CVS to manage everything. Again, it just takes a lot of planning and organization (which are not my strengths, lol) that people don't necessarily see or know about. And this is all going on while I work a full time job and try create a career as an independent artist and songwriter. And I do consider myself very lucky to be able to work and play music, cause I know not everyone with a chronic illness can. It's managing the frustration (and acknowledging that it's okay to be frustrated) while also having gratitude for what I can do, I guess.

What would make moving through the world easier for you?

More understanding and awareness about bowel/urinary disorders. Most people don't know about it and there is a bit of a taboo and negative stigma around any type of incontinence. It made me feel like I had to hide it growing up, which created a lot pf shame that I'm still working through. I only started talking about my medical issues publicly and on social media this past June, so it"s all still a little new being so open. Less of a taboo around it would be nice. Also, if restaurants and food producers would stop using latex gloves, that would make my world much easier. If anything is handled with latex gloves, I can't eat it and it makes my stomach really upset, so that makes eating a lot more limited for me. Lots of phone calls and conversations about latex gloves (which most people have never heard of, so I'm explaining that a lot). Also, everyone wear a damn mask and wash your hands cause I'm high risk and I really don't want to end up in an ICU on dialysis if I get COVID.

Do you have any life hacks? Coping mechanisms?

Journaling and songwriting for me have also been really helpful. And even though most people say I'm a very positive person, my journals are often really negative and not fun to re-read. Just lots of venting. And songwriting helps me process all of that too. And then I think just being aware of what does energize me, like taking walks (though I've needed a walking stick since the new catheter was put in) and playing music. Like when I have days that I'm stuck in the bathroom, lately I've been trying to bring a notebook in there and write songs, which is more energizing than binge-watching Netflix (though my bathroom adventures improved with invention of Smart phones and laptops, lol. Definitely helps to pass the time). Also, support groups online are really nice. I'm in a few Facebook groups for Latex Allergies and VATER Association and it's really nice to be able to talk with other people or read posts about people going through similar things. And even just searching hashtags on Instagram has been helpful. Like as soon as my urologist told me I needed a suprapubic catheter in June, I walked out of her office and searched #suprapubiccatheter on Instagram to see what it was like. And people to post pictures and stories about living with them. That was really helpful to see what I'd be getting into. It provides comfort since growing up I kind of felt like I was the only one in the world with all of these medical issues.

Support from family and friends? Has your disorder affected your relationships?

Yeah, I'm very grateful for the family I have. I kind of felt like I won the lottery with my family. My Mom managed all of my medical routines and appointments when I was a kid. And this was before the internet, so she was very good at self-educating. I remember doctors would always ask her during my appointments, "Oh, do you have a medical background?" And she would just be like, "No, I just learned it all from Laura". She is very organized and would look things up and really have an understanding of what was going on with me. And could pursue other treatment options too. And we were fortunate to always have good health insurance with my Dad's job and them my Mom's job so I was never aware of any financial stress as a kid. My parents and sister are very supportive of it and I still feel like I can ask my Mom medical questions I have. As a speech pathologist who works with children who have special needs, I've seen how hard it can be when families don't have a good understanding of what is going on medically, if there's denial, if they have have trouble managing all the home care and appointments or just have financial stress, and it makes life a lot harder. So I am really grateful for the family I grew up in. As a kid, I did experience a lot of teasing. I had the nickname "pampers" from 3rd grade through about 8th grade, which was not fun. And even close friends I told about my feeding pump in 6th grade were pretty mean about it, so I learned from an early age to be really secretive about my medical stuff. That if I told people outside of my family, it felt like I would be rejected. So I really didn't tell anyone outside of my family about it until college, which in hindsight, helped create a lot of shame around it. And it made dating more challenging. I've had 33 operations, so I have a lot of scars and my anatomy is a little different. And getting to know guys more intimately always brought up questions. And then it felt like I had to have this big "medical talk" with guys. I guess it proved to be a good filter for dudes who were more superficial, but it didn't make the rejection sting any less, especially cause it's hard when you feel like you're being rejected for something you can't control. I had one guy tell his Mom about it and she advised him against settling down with "someone like her cause that medical stuff makes life much harder" and another dude who said "I don't want to deal with this medical stuff my whole life" and those two instances were pretty heartbreaking at the time. Although I think I had a real insecurity in college and would project and say things like, "why do you wanna be with someone like me who has all this stuff" as a way to be reassured, but overtime, I get that it becomes a turn off. But I did realize what I was doing in hindsight and now just try to say, "You know, today I'm feeling insecure about X" instead of projecting it. And now I have a really supportive partner now. We've been together for 4 and a half years. He knows all of my medical stuff and has slept in bed beside me while I had a urinary drainage bag and has driven me to the ER and waited in the waiting room while I've had surgery. He is very supportive, and I'm grateful for that.

Is there anything you are afraid to tell those close to you?

I don't think so. Most people close to me know about all of my medical issues. I definitely try to "ease in" new people who don't know me well and not talk about everything in my medical life and history at once though. And I am getting more comfortable with sharing parts of my medical life on social media.

What energizes you? What drains you?

Music, being outside and dogs energize me. Lately, the news has been draining. But I guess just hard days when my stomach is off or my bladder hurts from the catheter can be draining.

Favorite shows? Books? Podcasts?

Oddly enough, I love medical shows. I think cause it was a way to see my experience reflected back to me as a kid (ER, Scrubs, Grey's Anatomy are prolly my favorites). But comedies like Seinfeld, The Office and Parks and Rec are great too. I love Walt Whitman's poetry. His writing about the body really helped me find more self-acceptance.

Favorite Purchase under $100

Banjo picks and a banjo primer book. I recently started playing the banjo and that's a nice release and almost meditative experience. I got an actual banjo (prolly over $100) for my birthday a few years ago, but picks and primer really got me in a new direction with it.

What is the hardest and/or best lesson your condition has taught you?

The hardest one is probably just impermanence. Before my catheter adventures this summer, I had a stoma that I cathed intermittently, and I assumed I would use use that to pee. And then everything changed and have this catheter that's in all the time now. I'm learning to live with it, but it's a big adjustment. Just what relative stability you have may not always be there, and that's hard. But I do credit my hours as a kid in the bathroom before screens where everywhere as what lead me to start making up stories and later writing songs. I don't know if I'd have the same perspective on life, and thus lyrics, if I grew up differently (without medical issues). I don't know if I'd be the same musician I am today without my medical issues. So to a degree, there is some gratitude because songwriting is my favorite thing and really the one thing that I can lose track of time doing. Ironically, my song "Nobody's Road" that is about my medical issues was the one that was received the best when I released it. And I thought it would be too personal, so seeing people relate to my perspective around something so personal was gratifying. I guess too, it's taught me some resilience.

Any questions you think we should add to this list?

Maybe just, how have your medical conditions impacted your songwriting? Just as a specific music question for me. But all of your questions were awesome

Have you subscribed to Invisible Not Broken's Podcast Explicitly Sick with founder Monica Michelle?

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Max and I talked about our favorite topic:

Creating With Chronic Illness

The Vulnerability In Medicine

Mischievousness And Explaining Disability

Destroying World Views of Healthy People

Humor and Disability

Hemophilia on Tour

Resentment and Rage

Tattoos and Other Ways To Control The Body

Song Writing and Storytelling

Chronic Pain and Careers

Covid and Music Touring

Interview with author and disability advocate Olivia Gaynord About

Her Book I’m Good

Feeling Like you Are Doing Enough When you have Chronic Illness

Mental Health and the writing process

Book Writing Process

Crowd Funding a Book

Chronic Illness and Writing

Too Far and Never Enough The PT dance of EDS

The Great British Bake Off Baking

How to Use Mental Health Issues

If you enjoy this episode please subscribe to Monica Michelle’s newest podcast Explicitly Sick

Website/Blog, Twitter, & Instagram Handle

Twitter: @CarrieALightley

https://www.carrieannlightley.com/

Name *

Carrie-Ann Lightley

What is your disorder? *

Cerebral Palsy

At what age did your disorder become a daily issue? *

0

Who were you before your illness became debilitating? *

I've always been disabled

What would you do if you were not dealing with your disorder and/or disability? *

I wouldn't be me!

What would you like people to know about your daily life? *

I LOVE my life – wonky, uncooperative, wheelchair-using body and all – I wouldn’t be the person that I am without Cerebral Palsy, and I wouldn’t want to be anyone else.

What would make living and moving in the world easier for you? *

More detailed, accurate accessibility information for venues, transport and services.

Do you have any life hacks? *

Maternity jeans! I'm not (and not planning to be) pregnant but have been wearing maternity jeans for a while now and I'll never go back. Like many wheelchair users I have poor muscle tone in my stomach, so my tummy sticks out. Wearing 'normal' jeans when I'm sitting all day is really uncomfortable.

What kind of support do you get from family or friends? *

I live with my husband and he helps me with all the day to day life things I need assistance with - housework, cooking, driving. I'm also lucky to have a lot of supportive family and friends who step in when need be.

Have you ever had someone, or a medical professional, not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *

No

How has your chronic illness affected your relationships? *

I feel like being visibly disabled makes me an excellent judge of character. I can tell within minutes of meeting someone, whether they're my kind of people.

Is there anything you are afraid to tell people in your life? *

No, I try to be very open.

What is your best coping mechanism? *

Reading. It helps me to relax physically, allowing my body to recover, and mentally it gives me an escape.

What are you the most concerned about and the most hopeful for in the future? *

I'm both hopeful and concerned about traveling again.

Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.

I'd like to be able to promote my blog

What makes you energized or enthusiastic? What drains you?

Exercise and creativity energize me. Overworking drains me, but is a coping mechanism that I'm trying to let go of.

Any favorite books or shows?

Henry Fraser's Little Big Things and Poorna Bell's In Search of Silence are my favorite recent reads. Grey's Anatomy is my all-time favorite show!

What is the hardest and/or best lesson your condition has taught you?

Both the hardest and the best - resilience

What is the best purchase under $100 that helped your life

A laptop case/travel bag that hangs on the back of my wheelchair