No End In Sight

72 – Emily

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Emily Suess talks about brain cancer, misdiagnosis, and finding community outside of neat diagnostic categories.

Transcript

Brianne: I’m Brianne Benness. And this is No End in Sight. A podcast about life with chronic illness.

[guitar riff]

Drew: Hey, welcome to No End in Sight. This is your associate producer, Drew Maar. Before we get started, we wanted to remind you that no end in sight has a new newsletter. It’s full of updates about Twitter conversations happening in our hashtag #NEISVoid, book and article recommendations about chronic illness and disability, and links to new podcast episodes and miscellaneous other media. If you are comfortably able to support our work, there are paid options available, but all core content will be free. You can take a look at previous newsletters and subscribe over at noendinsight.substack.com. Today, we’ll be hearing from Emily Seuss about brain cancer, misdiagnosis and finding community outside of neat diagnostic categories. One content note for this episode: Emily and Brianne start talking about COVID and lockdown at around minute 50, and that line of conversation continues for about 10 minutes. Before we start here’s our disclaimer, this podcast is not intended as a substitute for professional medical advice, diagnosis, or treatment. Make sure you talk to your practitioner about any questions or symptoms.

[guitar riff]

Brianne: Okay, perfect. So then I like to start just by asking people, how was your health as a kid?

Emily: Yeah. So I feel like as a kid, I was pretty healthy and normal. Looking back… I, was reading your… The transcript for your first episode, and that whole retrospect.

Brianne: Yeah everything looks

different.

Emily: When I look back at everything I think, “Oh, well that could have been a thing.” But as far as doctors and my parents and I was concerned, I felt like I was a pretty healthy kid.

Brianne: Yeah.

And that… of course, for lots of people, because people get sick in all kinds of ways, makes complete sense. So for you, was there a single moment when things started to change or did they change kind of gradually at
first?

Emily: It was… yeah, there’s a defining moment for me around 2014 when I… we have this brutally cold and snowy winter here, and I was just tweeting about this actually. And I fell and slipped on the ice and hit my head. I was unconscious for a couple of minutes or seconds out there. It wasn’t long.

Brianne: Yeah. Lost consciousness.

Emily: Yeah.

And so I always attributed that to just… it was cold and snowy, but I have a brain tumor. It affects my balance. Now that I look back at that, even, I question, “Well, would I have lost my balance totally, if this hadn’t been inside my head?”
So I don’t know, but after that point, to get back to your question, after that point, I felt like things just weren’t right with me at any point after that.

Brianne: And were you

thinking of it as a concussion at that time? A TBI or some kind of a head injury, or were you even thinking about it in that way at all?

Emily: I… at that point, no, I wasn’t because after the fall… it was a couple of days later, I went into the doctor cause I still was feeling kind of weird, and I thought, “Well, I better get it checked out.” So I had a CT scan, and there was no swelling or whatever. So… yeah, I’m sure I was concussed, but there was nothing that was alarming to anybody at that point. And then for several months after that, it was just… the fatigue hit me. I had never known fatigue before, prior to getting… What I call “sick”…. prior to that, I used to run 5Ks, and not because I enjoyed exercise, but I kind of enjoyed punishing myself.

you know, liked seeing what I could do and what I could… what limits I could stretch and whatever.
So I was in relatively decent shape before that, so when I started feeling this, and I was like 34 at the time. When I started feeling this decline, the first thing that entered my mind was, “Well, you’re just not being active enough.” And so I kept pushing, and I kept pushing. And it kept getting worse.
So that was the clue to me of just, “Know your own body and understand what’s happening.” That was a clue to me that something was really wrong.

Brianne: And at that point it was mostly fatigue… were you… I know it’s so hard cause obviously in retrospect, again, you have different vocabulary, but were you thinking of it as like, “I’m really tired, I’m sick. Something’s going on if exercise isn’t helping, cause it’s always helped before.” Were you in that space?

Emily: I was in a space where I was blaming myself a lot because, we lived… we were in a tiny apartment at that time. We had just moved to where I live now, but at the time we were in this transition. I had started a new job, and I thought, “I’m stressing out. I’m not taking care of myself. I’m not…” I put it all on myself.

Everything that was going wrong, I felt like I was doing something to make it happen to me.

Brianne: Yeah, it was all a self-care deficit and nothing else. Yeah. Okay. So that was… you said in… this is four to six years ago? How does math work?

Emily: Yeah. About six years ago. So 2014, it was about six years ago. It was October. Actually… back up there’s probably going to be a lot of me doing that while we talk, but in the months between… let’s say the summer of 2014, up to October, I had gone to a couple of doctors visits, you know, just primary care.

Like, “I’m so tired. I don’t know what’s wrong.” There was a point where I was like, “Okay, I’m not doing this to myself.
What’s
going on?” Yeah.
So I had the fatigue and then that’s about the time that widespread pain hit me, like everywhere. Shoulders, neck. I mean, there was not a point on my body that you could touch that
it didn’t… like, ouch, painful, hurt, you know, not just discomfort, but it hurt. And so I went to talk about that. Pain… I mean, I know a lot of people that listen to this… pain is not received well as a symptom
by doctors. So that was… that was kind of thrown out the window, you know? I don’t blame that doctor specifically for that, but it was just… and I was part of the dismissal myself too because I just… people don’t hurt that long,
right? Pain is an acute symptom…
we’re taught this from childhood… that will go away if you just give it time. Well, it never did. And she didn’t really have anything to offer me. My blood pressure was doing weird things, but not consistently. I would go in one time, and it would be like, “Well, that’s kind of high.
Do you usually run high?” And up until that point, no, I’d always been a little bit low. My blood pressure had been really good. So then I started like, “Well, I’m in pain, of course my blood pressure is up.”

Brianne: Yeah, maybe it’s the same situation.

Emily: And there was just so many things. Eventually I went to a nurse practitioner because I couldn’t get into my primary care physician. And she’s like, “Oh, well, you’re 30. I have all these clients with fibromyalgia and you know, we’re going to run some tests. We can rule out some other stuff.” And they did a handful of things. My blood work didn’t show anything.

And then I got referred to a rheumatologist who was like, “Oh yeah, you’re 30, you’re overweight.
And you’ve absolutely got fibro.” You know what I mean? “The blood work doesn’t show anything. So that’s what you have.”

Brianne: And that’s a real classic… fibro is diagnosed too early by so many people.

Emily: Yeah.

It was… and I didn’t know any better at the time, but that doctor was a horrible doctor. He was one that I ended up contacting the board about how bad he was, and he no longer practices in this city. I was not the first person to complain about him. Anyway, he… I had other symptoms where he
would even say, “Well, you’ve got some kind of weird autoimmune thing going on that I don’t really understand.” He would admit that, but he would not look any further at anything.
So it was three years of me just off and on going back to different doctors… maybe for a week, I’d be like, “Okay, I have fibro. I need to accept this.” And then something weird would happen, and I’d be like, “No, this is not fibro.”

Brianne: And were you, I mean, I know that there were not that many treatments available, but were you trying a medication or had you… that was a “Yes.”

Were there interventions
at that time?

Emily: He immediately put me on Cymbalta or duloxetine, which is the antidepressant. It didn’t really do anything for me. It made me feel really weird. And then finally, I just decided, “This is not helping. There’s no reason to keep filling this prescription.” So I stopped, meanwhile looking for another doctor to help me figure out what was wrong. But that… I mean, they did at least try something, but it didn’t work.

Brianne: No. And just… as my own, what’s so frustrating about it is how typical… those are the first pathways. And not that they’re always wrong, sometimes they’re right. But most doctors are overestimating how often they’re correctly identifying fibro and depression specifically.

It’s not as common as you think it is. There are other explanations a lot of the time.

Emily: Yeah. That’s another thing I was simultaneously diagnosed for the first time with a depressive disorder when I had the fibro diagnosis by that doctor. So he gave me two diagnoses and then we never really talked about the depression, but it was on my chart.

Brianne: It informed your care.

Emily: I was like, “Okay, that’s kind of weird, but…” But after that… it feels like it was an eternity, but it was a couple of years of me just going back and forth with different doctors, being referred to specialists back and forth and back and forth.

Brianne: And were you… had you been working or were you working at this time?

Emily: I was working. So I worked all the way up until the point they found the brain tumor.

Brianne: Okay so you were definitely working.

Emily: Yeah, I will say there was a point where it got so bad that I took paid leave for as long as I could and then just stopped working for like a month on FMLA.

Brianne: Right.

Emily: Because I was… I couldn’t do anything.

I was just so run down, stressed.

Brianne: You were like, “I’ll take a month to recharge, figure it out.” I’m using air quotes, listeners. Yeah.

Emily: Yeah. So… I don’t know where I am in my story. This happens to me a lot.

Brianne: That’s okay. That’s so normal. So you were saying you were… because I interrupted you to ask if you’d been working. So you were working, you had been diagnosed with fibro and also depression, and then you tried, I think you said Cymbalta, and eventually you gave up on the medication. Basically, you were like “This isn’t making sense.”

Emily: Yeah. So during this time too, I did a whole lot of Googling because nobody was helping me, and I know we all… I mean, I watch the NEIS Void stuff. I mean, everybody who has ever encountered chronic illness has come across this.

you This wall of, “We’re not going to help you, but also we’re going to degrade you if you go searching for any information.”

Brianne: Yeah, “We don’t know what to tell you. Don’t try to find it out yourself.

Just pretend it’s not happening. That’s the advice we have for you today.”

Emily: Yeah. And it was really frustrating and I. I have a lot of medical trauma. And I’m not over exaggerating, but a lot of trauma and a lot of baggage that I carry around with me to this day, even with a diagnosis and a serious one that people take seriously . I still carry that with me.

It was really hard to go through that for just a couple of years, and I know there are people out there… decades with and I just can’t not empathize with everybody who has experienced something like that cause it really is hard. It’s hard to deal with.

Brianne: Yeah. It’s so disorienting when it’s like, “My body isn’t working the way that I expect it to, and the system that’s supposed to help me isn’t working the way that it’s supposed to.” There’s just failures in multiple directions, and then often the people around you aren’t aware of how either of those other things are failing because they can’t see it.

So they’re just kind of like, “Okay, sure, whatever you say.” And you’re like, “Can’t you see everything crumbling around me?”
They’re like, No, but I believe you.” You’re like, “Do you?”

Emily: And some of them just outright didn’t believe me. I mean, you could tell. There was one nurse practitioner in particular who was… I don’t know. She was just not very helpful to me. And she… I don’t feel like I ever did anything to ruin that relationship myself.

Maybe I said something that just set her off at the beginning and I wasn’t aware, but there was one point where I was struggling with all of this. And I remember saying to her, “Well, what if what I have is seronegative?” Because someone had said they had rheumatoid arthritis that did not show up in blood work.
And when I said seronegative, she laughed at me. Like I was too big for my britches, using such a big word. And she wasn’t even a doctor. She was just a nurse practitioner dealing with me. And that really hurt. I carry that with me and never went back to see her again. That kind of thing. So by the time I finally… by the time I finally was like, “I’m bringing my husband in.” God, I hated bringing my husband into the doctor’s office. I should not have to do this. It’s not that I minded him being there, it’s that I shouldn’t have to need him

Brianne: Right. Yeah. There’s two stories there. It’s nice to have someone for emotional and memory support, and also it shouldn’t be necessary to have a cis white man in the room to be taken

seriously.

Emily: Right. Exactly. Exactly. So yeah. He… I had this episode where the two of us were in Walgreens getting stuff, and I was just… I got so tired. I didn’t think I could leave the store. I got out to the car, and when I went to go and sit in the passenger seat, one of my legs… I was just… it was so… just laying there, like heavy, I couldn’t lift it. And that’s when I told the doctor, my primary physician, who was a new one now that I had switched and she was like, “Oh, well, that’s not part of fibro.” I was like, “Well duh. This is one of…” I’m sorry. That was… duh was one that I was not supposed to say.

Brianne: You’re like, “I am not surprised to hear that because I’ve been telling you for ages that most of these things were not fibro things.”

Emily: Yeah. Yeah. And so a lot of that stuff… it just got ignored. It either got ignored or explained away as, “Oh, well, sometimes fibro is just weird, and everybody’s experiencing a different kind of fibro.”

Brianne: Yeah, everyone is experiencing a different kind of fibro because those people are misdiagnosed.

Emily: Right. So when I told her that, she actually did… and my husband was there in the room, and the doctor kind of said under her breath, while I was walking down the hallway, so she could analyze my gait… My husband said, “This isn’t fibro.” She said, “Yeah, this isn’t fibro.” So we went back into the exam room and she did a physical exam where she actually had me take my shoes off and then did this with my feet. And then they were like… it’s called clonus. And they just… there’s a nerve impulse or something, and she was like, “Whoa.”

Brianne: Something’s happening! Something observable.

Emily: Yeah. And so at that point I said to her, and this was after I had been researching, I was convinced that I had MS at that point. I was just… there were so many things that matched up and… oh! And I used the… I don’t know if you’re aware of the Isabella symptom checker.

Brianne: I don’t think I am.

Emily: Okay. Well, it was… I can’t remember if it was an app I put on my phone… it might’ve been both or just something online, but you plug in all your symptoms. And it throws this crap back at you, which is not something I recommend unless you were at your wit’s end because it said MS, and it said brain tumor

when I put my stuff in.
So. I was freaked out, but trying to tell myself not to be freaked out. I knew clonus was a symptom. I didn’t know I had it because it was something that somebody had to actually physically manipulate my body in a way to figure it out.
That I would never… I don’t think I even could do it if I wanted to.

Brianne: Right. Yeah. It’s not something you’d find out by accident.

Emily: Yeah. So I told her at that point, “Can we rule out MS?” And then she was on board with doing that, and ordered an MRI right away. Or as soon as possible within the healthcare system,

I should put it that way.
I actually had to… there’s a hospital here where I live, but I couldn’t get in for a couple of months there. So she’s like, “Well, would you and your husband be willing to drive like an hour away to go to this mobile MRI set up by our healthcare system?” And I was like, “Sure.” So I did that. The day… was it the day I had the MRI? That evening I had missed five or six phone calls.
They were trying to get ahold of me so fast. And I was like, “Oh, something’s up.” At that point I knew… not what it was, but that there was something going on.

Brianne: There was a level of urgency and how many years into actively searching was this, again?

Emily: So 2014, and it was January of 2017. So it was like two and a half years of me trying to find out, I would say, what was wrong. At that point, where all of that had been bad enough that I knew something was wrong because there. We asked the doctor when I was diagnosed, well, how long do you think this brain tumor has been inside my head? Because, and he was like, well, we don’t know. We have no way of knowing it could have been there for years. And only recently come to a point where you physically noticed, what it was doing to your body. Anyway, back to the primary physician conversation. Yeah. After they finally reached me, they’re like, okay, you have to come in tomorrow. And so I did the, they didn’t tell me anything over the phone because standard practice, they don’t want you flipping out.

Brianne: That must’ve been a difficult night though. Especially as a lot of standard labs are available which… it makes it more… something. I’m wide-eyed. Yeah.

Emily: Yeah. So she told me that… my husband was there with me, and I had to be wheeled in that day. Cause I could walk, I could get myself out of the car, but I was just so exhausted.

And my physical ability had declined to a point where it was just like… even I have to go a hundred or 200 feet, I just can’t do it.
So we wheeled me in, and she told me that I had a brain tumor and went over what she knew about it and what she was going to do for me to get me in touch with whatever. And as Dan and I were wheeling out to the waiting room, so we didn’t have to sit in that enclosed space while they were trying to get everything sorted. I just laughed while he was wheeling me down the hallway, and I said, “I told them I was sick.” It was such a weird and surreal moment for me because I was happy that this woman just told me I had a brain tumor.
And that is bizarre. And I still… I’ve had a little bit of that grieving process over being given a diagnosis that like, “Whoa.”

Brianne: And that you’ve to be scared of your whole life, right? That has been specifically named as a scary thing,

like a boogeyman medically.

Emily: Yeah, I still haven’t totally been able to just outright grieve Like I hear other people say they did, it’s just this long ongoing process because I’m still so happy to know what it is to be able to name it. That I feel the sense of relief. And at the same time, it’s conflicting with all of this, like, Oh my God, it’s cancer.

And it’s not just cancer it’s brain cancer, you know, that is supposed
to be terrifying.

Brianne: A scary combination of words.

Emily: Yeah.

Brianne: Like, understandably so.

And so
at the beginning were you… so you had seen your… you had been told by your PCP, and then got referred to a neuro-type person? I don’t know specifically.

Emily: Yes. So as soon as she found out about the tumor, she called the hospital healthcare system here looking for a doctor to refer me to

within the system. A neurosurgeon, a neurologist… not a neurologist. I had already been to one, but somebody
that brain tumor was their thing, and
whoever was in our system at the time was on a sabbatical or something and not there. And there was this interim guy that was doing work in that vein, but he was not a full-time employee of the hospital.
So that person was leaving town, and so she got a recommendation from him, though, for me to go to St. Louis, to Barnes Jewish hospital, which is… was two and a half hours from where I live, I think. And so she did that. She called in. She got me set up with somebody who was like “Brain cancer is
the only thing I do.” And so then that same day I drove to the hospital and was admitted via the emergency room, because that’s how the doctor… the neurosurgeon wanted me to do it, was just, “Go to the emergency room, check in, and tell them that you’re here to see me.”
So that started my nine day hospitalization for this thing, and they did brain surgery on me. Just as… for a biopsy, they were trying to identify what they were dealing with. They couldn’t… they’d done so many MRIs and everything and looked at it from a billion different angles. They knew they couldn’t cut any of it out because of where it was and how it… It’s a diffuse astrocytoma technically,
so it has tendrils kind of and wraps… there’s no clearly defined border in it, throughout most of the tumor. So they can’t just go in and start cutting things in there. So that’s why I had the brain surgery. It was to take a couple of cells, send it off to foundation one, which is a genetic testing for Tumors and cancers and stuff. So they knew exactly what type they were dealing with and that kind of thing. And then that nine day stay was just surrounding that process, finding out what
they were dealing with.
And then I was dismissed, and after I had a very short time to recover from the surgery, then they started in immediately with radiation and chemotherapy.

Brianne: And so what was the timeline from the MRI to chemo and radiation?

Emily: Two and a half months, three months.

Brianne: Okay. Cause you were talking about how your reaction was not what you would have expected your reaction to be. And so it also must have been happening pretty quickly. I mean, I’m sure it

always happens quickly, but…

Emily: It did happen happen very fast, yeah, and the surgery and stuff… there was this time in between the end of the surgery and before they were willing to start me on chemo and radiation, becase that’s obviously you got to get well enough from the one

thing to
endure the others.

Brianne: You want to heal the acute injuries.

Emily: Yeah. So I think I was in the hospital, like the beginning of February, and then I came home mid-April. So what is that six weeks or so? So it wasn’t, as long as I was thinking

Brianne: Yeah. But it probably was…

Emily: It felt like an eternity.

Brianne: Yeah, a chaotic time and especially. It’s weird. I’m sure it happens more than I think, but like cancer, there are so many more cancer stories in media and everything, but I think we still get the impression that people are surprised by the diagnosis. And partly because it’s been such a short time, I’m not saying, I think this actually happens. I’m saying the media makes it look like cancer is something that. As soon as you get symptomatic, it’s probably going to be caught because that’s the kind of story that it is. And that’s not how our healthcare system works. Yeah. And that’s also a really, I think, disconcerting thing to be like, “Wait, I thought if I was going to get a diagnosis, I should have gotten the diagnosis when I started asking questions, right?” There’s so much… I just made a face because I don’t know what word, because I’m having a lying down day, but it’s so the messaging and the reality are so conflicting and I feel like that’s a difficult thing in addition to the actual processing and coping.

Emily: Yeah. You see a lot more… when it comes to cancer, you see a lot more from media about either very good or very heartbreaking stories, but the majority of us with cancer are living in this chronic illness… You know, the void, as you call it, where we are our own kind of support system, but are largely unrecognized by anyone who is not a direct family member or has some kind of contact with how that is because I’m three years out, and I’m not dead, but I’m not well. And I am never going to be healthy either. You hear about people who maybe get diagnosed with a cancer and they’re in remission, or they’re no evidence of disease. That’s not going to happen for me because they can’t get rid of what I’ve got without killing me or coming close to it.

Brianne: And so you started a treatment which… cancer treatment is difficult. I feel like it ties directly into what you’re describing. So your first round of treatment, which had happened very quickly after everything else… And so you had… you said you stopped working after you found out that it was a brain tumor at that point.

So you And if you were in the hospital for six weeks, I assume that you were at least not also at work at that time. Although I know people do work remotely a lot from the hospital. Don’t want to erase that.

Emily: It wasn’t like as soon as I was diagnosed with the brain tumor, I was like, “Okay, I’m never coming in again.”

Brianne: “I’m out of here.” Movie moment.

Emily: It wasn’t like that, but I was saying to myself, “I’m not going in. I’m not forcing anything until I feel like I’m up to it.” And at that point I did think I would be back to work.

I figured there would be at some point, I didn’t know how long or how far out… that I would end… it didn’t happen. I didn’t get better. I got better, but I didn’t get well enough to
do a job again.

Brianne: Not to what you had expected… your previous baseline that you were looking at, had they… at the beginning, or at this point, what kind of expectations were they giving you about what to expect from treatment, how to… what kind of care you might need? How were they… when you get the diagnosis, what other information were you getting?

Emily: Nothing. I have a very rare kind of tumor in a very weird spot that they don’t know a lot about. And didn’t at the timen and I kind of don’t want to know a time. I don’t want a prognosis of, “Oh, you could live this many…” I don’t care. That doesn’t… I’ve got whatever time I’ve got, and you telling me something isn’t… is only going to make my depression over this and that kind of thing worse.

Brianne: Yeah.

Emily: I really wasn’t given to any kind of information like that, but I don’t… I don’t hold it against anybody. I didn’t want it.

Brianne: Yeah. Yeah. And I also would… I mean, suspect that they’re guessing a lot of the time in a way that maybe isn’t going to make things easier to hear a person who’s removed from your life hypothesizing as if there are no consequences to guessing out loud.

And it’s like, “Maybe I don’t need to hear you guessing out loud if that’s what you’re doing. Maybe that’s a private conversation for you to have with your brain, doctor who likes to think about this.” Yeah. So then treatment, you were like, “Okay, we’re doing this, and we’re just gonna find out how it goes, basically.”

Emily: And it did go… the first, there was a simultaneous chemo and radiation. The chemo was supposed to make the radiation work better, and it did. When that ended, I went back, I have… for a while, I had an MRI a month. Now I’m down to every four months, I have an MRI, but it did shrink it.

And I got some very welcome symptom relief in certain areas, but then my brain fog is… just from having pain and stuff like that, I had brain fog, but then you take chemo long-term, you have your brain radiated. It’s not going to just take the tumor, right? So I have some to this day, even though that was 2017. I’m coming up on… wow, I’m coming up on four years out from that, but I still don’t… I lose words. I lose train of thought. And that will just always be. That is how things are now. But I finished that. They did shrink it, and then afterwards they put me on adjuvant… or I don’t know. It’s the second round of higher dose chemo.
There was no radiation with it, but I did another year of chemo, which was a once a month pill.
Mine was a pill.

Brianne: Yeah. I was going to

ask about the… how they were administering it.

Emily: Yeah. High dose of chemo that I had been on at the low dose before, I had this crazy reaction where I almost died.

Yeah, it was really, really bad. I landed in the emergency room, but I was back at home here in Illinois at that point. I went to the local emergency room where they were trying to kind of sort things out for me and figure out what was going on. They were in contact with my doctors in St. Louis, and the final verdict on that was that I had some kind of eosinophilic reaction on the higher dose. I just couldn’t tolerate it, so they took me off of that, and I went on their second line… it’s not the one they prefer to use for patients, but I guess it’s okay.

Brianne: Your backup chemo.

Emily: Yeah, I got the second one, and I finished out that year on that with just standard chemo problems. Not anything that concerning. So… and then I finished that chemo in 2018, and I haven’t had any other cancer-specific treatment since that time. And I haven’t had any change in the tumor since it shrunk that one time, so it’s still the same size as it was every time I’m going in for my MRI. So what I

have, I have, and, just being completely honest with myself, whatever I am experiencing right now is about as good as I’m gonna get. They do think it’s a slow-growing tumor. So, I don’t know. Maybe they’ll have a cure by the time it becomes a dire circumstance for me.

Brianne: Yeah. And now you know it’s there, it’s obviously impacting you, and the pace of change for it is not something that you need to think about every single night, basically. You’re pretty stable physically, which I realize is probably… it probably is optimistic to describe health as stable in general and also probably erases the emotional difficulty of being sort of stable, but still knowing that you’re still… all of it. Words are great for me today.

Emily: Yeah. Yeah. [Laughs.] That’s every day. I just… yeah, I don’t think anything of it when someone is like, “I can’t.”

Brianne: Yeah. Okay. We were kind of saying… so you were talking about getting… you were talking about… you finished all of the treatments, and so you have sort of stabilized and growth has sort of stabilized, and that’s where you’ve been for a couple years now, it sounds like.

How… so you went from… you were doing chemo and radiation together, and then you did the next year of chemo, which you’re talking about after the reaction. And then, so how was the transition from active treatment to, “Let’s see how things are,” basically, which must be what that transition was like… the reassessment.

Emily: It’s been kind of weird because I thought I would get so much better than I did I’m not saying that those treatments weren’t worth it. They definitely bought me time and whatever, but I did anticipate… those two… those phases were over for me, that I would start gradually improving. And I’m not, I’m at a flat baseline… with ups and downs. I

mean, there is the, occasional day where I’m like, “Oh, well, this isn’t quite as sucky yesterday.”

Brianne: “I’m very active today.” Yeah, “with consequences.”

Emily: Yeah. Right. Yeah. And I always pay… when I’m having a good day, and… cause I feel up to it, I will always have at least a day, probably a week of just, “I can’t do anything. I’m going to have a lie down in bed day.” I go to bed at like six or seven o’clock at night, or I’m lying down on the couch by six or seven, because I’m just finished. I am wiped out. There’s nothing left. So yeah. So I never did get to go back to work. I had disability insurance, which… I had a very public fight with them. [They got a] doctor, who never met me to say, “You’re in remission.” You can’t be in remission when there’s a tumor in your head, right? So they cut off my benefits, and I had that whole long fight. And that finally ended… the attorney got my benefits reinstated for me. And so I’m finally at a point where the external stress of all of that, at least, isn’t on top of me navigating my newly disabled life and poverty and cancer. And you know, so at least that’s gone. But that’s where I am. I do have still this drive. I was… I don’t know if I would call myself a type A, but I was a very ambitious person and did a lot of things. Just because I wanted to test what my limits were, and I still try to do that kind of thing from time to time, but it’s a double-edged sword. I think, “Oh, I’m so proud of myself for what I did,” but also I am paying for like a whole month for doing that thing. And that is really depressing.

Brianne: The

payoffs don’t feel the same.
Yeah.
And how… cause you just talked about the disability insurance thing, how long was that going on, compared to how long since that been settled? What’s the ratio on… do you know what I mean?

Emily: Time-wise.

Yeah, so the fight. Okay. I have two different kinds of disability insurance. Here in the States, we have social security disability insurance. If you work, you pay into that. It comes out of your taxes. You don’t even think about it. So I get that and have got that 1.) People, particularly who have diagnoses like depression or fibromyalgia or whatever, because those aren’t taken seriously by the system, I guess… one of the high points of having brain cancer is that my government disability insurance never been in question. It’s not enough. It’s not saving my husband and I from, you know, They approved it right away, and they have never tried to take it away from me. The supplemental insurance that I purchased through my employer was a private insurance company, that… they paid it for two years Without much question, and I was really shocked at the end of the two year period when they were like, “Oh, you’re fine
now. We don’t have to pay you anymore.” And I had to go through two appeals processes where you basically… it’s the most horrible thing to put somebody who’s sick through, but you appealed to them, not an independent third party or whatever, you have to appeal to them.

Brianne: Like arbitration, kind of?

Emily: Yeah. To say, “Hey, wait, I really am sick and deserve these benefits.”

And they can do what they want. You have to get an attorney. I mean, there’s no way.
And luckily I made just enough from that, for it to be worth an attorney doing it on
contingency.
So, they would take a chunk out of those benefits after they won the case
for me, I didn’t have to
pay up front. Where that’s not the case, they can’t even get an attorney because they don’t have… they’re impoverished by their medical condition, and they can’t pay up front, and the attorneys will be like, “Well, even if I win this for you, it’s not going to be worth it to me
to take on your case.”

Brianne: So a lot of people can’t even.

Emily: Right. Unless they can fundraise, like GoFundMe enough to hire an attorney to go after these people.

It’s a really horrible, horrible system. But I did find an attorney. She was great. She helped me get through the process, and after a year they reinstated my benefits because I mean, clearly there was…. there was no, none of my personal doctors [thought] that I was fine, that I could do… they had some doctors say, “Oh, she can push and pull 30 pounds and walk for 30 minutes.” And I can’t do any of that. Not because I don’t want to, I physically can’t do it. And they were using that as a basis to deny my

Brianne: claim.

Yeah. And like you said, one of the things that so makes me want to pull my hair out about this is how clearly it demonstrates that, it’s not really about the documentation. Cause you’ve mentioned this, but so many things that are hard to document within some invisible illnesses when they’re still medically invisible, because everything starts out invisible.
They can be hard to document, your doctors might not believe you, blah, blah, blah. But you’re in this situation where all of the documentation is on your side, the tumor is
present.

Emily: And they still tried to deny me.

Brianne: Yeah. Yeah. They don’t… it just really shows you that the default assumption is that they’re going to try to make it look like you’re more…

I don’t even know what word to use, because I feel like every word is charged in this scenario, but yeah, able to force yourself into production mode, when in fact you are not able to do that. And certainly not able to do that for more than probably a week or something.

Emily: Yeah. One thing I kept saying during the process was, “If they won’t… if they’re doing this to me with a brain cancer diagnosis, that’s labeled inoperable, what are they putting these other people through? Who have literally anything else?” Because if I can’t get it… if I have brain cancer, and I can’t get people to be realistic about what I’m able to do, my God, what are these other people enduring?”

Brianne: If this is what sympathy looks like, based on what you’ve been told to expect. Yeah, yeah. So you… okay, so for a bunch of reasons, in this one instance, the stars aligned enough that you were able to find an attorney, and you were able to appeal successfully. And so that has been resolved for about a year, did you

say?

Emily: Yeah. When did I… my benefits got reinstated in March, so it went from March of 2019 to March of 2020, I went without benefits because they were claiming didn’t qualify for them.

Brianne: Right. And you are actively fighting them for that year? Yeah.

Emily: And it took me that whole year of fighting and I mean, fighting-fighting I went after them online.

I did everything
that I everything that I could.
I saw some of it on Twitter.
Yeah. I did everything I could within my power to do it first without an attorney. Cause I couldn’t find one initially.

Brianne: Right. Yeah. That must be hard.

Emily: Yeah, well I had… I did have an attorney in the beginning who said, “Well, maybe…” because there were two appeals that I had to go through before I could sue them. She said, “Well, maybe you should just do the first one yourself and see what happens. And then…” so I did that. It didn’t work big surprise. So I went back to her, and she changed the price on me.

Brianne: Oh no!

Emily: In that time. And I was like, “Oh no, I am not playing this game. I have been screwed by so many people.” I started searching again, and that’s when I found this other person who really did help. And I just want to say if there’s somebody out there who is like, “I need a recommendation, I don’t know where to go.” I’m not going to broadcast that information, but I would definitely be willing to have a private conversation with somebody and say, “Hey.

You know, here’s what to look for. Here’s where you could start with this person maybe, and see where that goes.” But because it was a person who I live in Illinois, the attorney was in Tennessee, it was all done long-distance which was super helpful for somebody who’s disabled, but even more so now that we’re in the middle of this pandemic, right?
They did everything without me ever having to step foot in their office. So…

Brianne: That is great. And so, okay… and so that it’s… I mean, not to make light of the world’s timeline, but so if your benefits were resolved in March of 2020, then I’m going to go ahead and assume that you didn’t then get to take a deep breath of relief and just start peacefully adjusting to your new situation.

Emily: Right. No. So I still have at least 50 grand in medical debt that I just can’t pay. This is helping me keep a roof over my head. It is not… and during that year where they weren’t paying me, I had to put so much stuff on the credit card or just deny… or if it was a house issue, just not fix it.

I mean, is so much. Extra additional hardship that comes along with that just fighting those people to get that reinstated. And I’ll probably never feel better or feel comfortable. It’s just that I am food secure and shelter secure right now, and that feels really awesome
compared to where I was like a year ago.

Brianne: Yeah. Yeah, yeah, no, it must be both a really big adjustment and a big improvement and a big reduction in one of the stress buckets.

Yeah. And then the pandemic started also around that time. So, how has that impacted? I don’t even know… your experience. We’ll say.

Emily: Yeah. So I went to therapy for the first time during the pandemic. It definitely had an impact on my emotional health, and it’s not because I’m trapped inside my house. I’ve been unable to drive for like five years. And all of that was not an adjustment for me, but just being bombarded with how little people are concerned was totally messing with my mental health.

I was depressed, majorly depressed by the actions of other people. The stuff outside my control, what your therapist will tell you, “You can only control what you can…” that doesn’t help in this situation because what I can’t control could kill me. So anyway I am glad to see the news of the vaccine and whatever, but still disheartened by people who are like, “Oh, I’ll be fine.” Well, good for you. Glad you’ll be fine, but I wish you would take one little tiny step to help somebody else who might not be.

Brianne: And I hate it on both sides because it… I have also really struggled with everything that we get… all the disdain that we get to see from people, and how little they give a shit about adjusting anything. We’re also recording this… I should say this because it won’t be out for awhile.

We’re recording this on the Saturday after Thanksgiving, so it’s been really loud this week, I think, although I’m sure it will continue to be really loud. But the other thing that gets to me… because I have dysautonomia and I’m on that side of chronic illness stuff. I’m like, “So many of you are not going to be okay.
I know what is coming for you.”
And I wish there’s… I know, I think a lot of people feel versions of this… of like 1.) Don’t make disability into a punishment or the worst possible outcome, but on the other hand, your health is precious. Take care of it.
I don’t know. It’s painful in each of those directions in ways that… the word for when people are careless about something, but the fancy word for carelessness, that’s fine. I keep thinking debonair, and that is definitely the wrong word.

Emily: It’s been an experience, that’s for sure.

Brianne: Yeah… On the one hand, there’s so much exposure to how much people do not want to be inconvenienced to keep other people safe, and then also, so many people who think they’re vulnerable to chronic illness, which they’re not. But all of that I think is what I was ranting about.

Emily: Yeah.

Yeah.

Brianne: Yes, so that, okay. But then… so we were in your story, close to the present now, but so that kind of happened at the same time that that was happening. But as a person who’s mostly at home, the pandemic kind of has a weird effect, right? It’s not that your daily life is… this is me, too.

I’m projecting right now, but my life has not changed that much day-to-day, but it’s affecting me a lot.

Emily: Yes. Yeah. That’s how… that’s a good way to put it. I feel exactly the same way, and when people complain, I jump between empathy for them, like, “Yeah, I know what this is like. I’ve been doing that for five years and didn’t want to.” I jump between that and, “Oh, well, welcome to my life.”

Feeling kind of snarky about it because there’s a whole population out there that just deals with this all the time, and there’s no external pandemic that everyone gets to experience. And then we don’t get the empathy back. It’s not reciprocated, so yeah. There’s that too. There’s that struggle with, “I should really be a good person about this, but then also I feel really petty right

Brianne: Yeah. it’s so specific. It’s not like 1.) It’s definitely not like I’m glad that a bad thing has happened to anybody, but it’s just so hard to listen to people complain about this problem as if they’re the first ones to ever go through it with being stuck at home and stuff.

And it’s like, “Okay, it is hard. We do have a lot of empathy for that. But you’re erasing us from your narratives that are ours.”

Emily: Right. And when this ends, you’ll be back to not giving it a second thought, and we’ll still be here living this, constantly 24/7.

Brianne: Yeah. And that’s going to be, I mean, I don’t like to think about the future with the pandemic too much. Cause I feel like it’s even… I know we have some good vaccine news. I’m excited about that, but I try not to make predictions cause I know how… you know?

Emily: Yeah definitely. Everything is teetering on a thread. We need some kind of hope, but at the same time, hope and confidence are worlds apart I’m not confident that we’re getting through this unscathed. I just at least have a little bit of hope that we… when I say we, I mean, me and my husband specifically, because so many people have

been.,.

Brianne: Right, right. And I think about it in terms of this is actually a weird chronic illness analogy that I hadn’t really thought about before, but with the vaccine, I’m excited that there’s a vaccine coming, but I have very little faith that the vaccine is going to bring our lives back to normal anytime soon, if at all.

Emily: That’s true too. Yeah.

Brianne: I know there’s a normal coming. There will be a new normal, I believe that blah, blah, blah.

We don’t have to have a whole philosophical conversation, but I think there’s a line too, of people who have had their lives kind of turned upside down for health reasons and know that you can’t just, turn it right side up again. It doesn’t just go back, it goes to a… you settle differently.
And I’ve been thinking, I guess I haven’t been thinking about that on purpose, but I think I’ve been processing it in the same way of major upheaval. It doesn’t really get better, but you learn to live in it. I don’t know if that makes sense.

Emily: It does. It makes perfect sense actually. Coming from our experiences of how this, you know, how our lives have kind of shaken out so far, yeah. You know that a major trauma like this cannot be just fixed overnight. There’s… even if they had cured me of cancer… if… I would still be dealing with all of the things that led up to the diagnosis that were so hard on me.

And you’re not just going to get over that in a night.
Yeah, pandemic is the same way. We’ve lost people, and we have traumatized certain groups way more than others. That’s not something that we can just walk away from when the actual threat of the virus is over.
There’s so much we still have to deal with.

Brianne: Yeah. There’s…. I mean, as an illness show, I’m going to focus on one thing, but not because I think it’s more important, but even just that the healthcare workers are going… this is a generation-defining event for healthcare workers, and I think it’s probably… separate from how Long COVID is going to define probably healthcare for a long time.

I think the experiences of all of these medical workers who… as much as on the show, we complained about medical workers a lot because experiences of chronic illness and healthcare are one thing. Acute emergency medical workers are doing a different thing, and they are not doing the job that they signed up for,
and it’s going to, I think, really affect healthcare for everyone. Even more than the lockdowns already have, And they have affected a lot. So now we’re out into speculation zone, but…
this is what 2020 has been like.

Emily: Yeah the entire year, I mean, essentially the entire year.

Brianne: Yeah. I mean, it feels like it. Is there anything that we haven’t talked about that you wanted to talk about?

Emily: Nothing that’s coming to mind.

You I just always feel like the thing is talking about it. To validate for myself, to remind myself, but also to let other people know this is the thing that happens to whole lot of people. And if you feel like the world’s against you, it kind of is. You’re not making things up or over-exaggerating, there are some definite hurdles to cross, whether it’s diagnosis or just living with

Brianne: illness.

Yeah, there are real hurdles. And how do you find… this is actually… you talked about this a little bit earlier, but since I haven’t talked to that many people about cancer as a primary conversation, what have you found community-wise? So you mentioned that the type of tumor that you have is pretty rare.
Did you look for other people who had really similar experiences or were you looking for people who might relate? How has that been for you finding community in this kind of in-between

Emily: space?

I’m kind of a loner, just by design and I didn’t actively seek community, but I did just stumble into it through Twitter mostly, and have found community there. I have literally, no in-person cancer connections. My dad had cancer. I know plenty of people who have had it, but it’s just a different thing for everybody.
Ande my dad has no evidence of disease. He’s not living the same life
after treatment that I am, so while he gets a lot of what I went through, he doesn’t necessarily understand anything more than just an intellectual understanding of what life is like now.

Brianne: Right and the day-to-day of living with a chronic symptomatic experience.

Emily: Yeah, because he was one of the, what we would call a positive cancer story, where things worked for him, and he got to a point where the cancer… I wouldn’t… there’s still always that… even for people that are in remission or whatever, you will hear them say, they’re still always that little thing.

It’s hanging out there. It could come back. It could… so there’s that, and I don’t want to dismiss that at all because that’s a very, very serious thing for anybody to deal with.
But. it is not the same kind of thing. It’s easier to put away for 24 hours, while you go to… you know, whatever, I was going to say a family gathering, but we’re not doing that right now, either.
But you know what
I’m saying.

Brianne: Your brain might forget for a minute because your body isn’t. If you’re not thinking about it, your body isn’t necessarily… some people’s bodies aren’t… every generalization we both know that we make, we’re like, “We know that it’s not true for everybody,” but there are some people who get to live a more or less asymptomatic life after cancer treatment.

But of course that doesn’t undo the experience of having lived with cancer and knowing that that happens. Yeah. And also it’s not the same as cancer management where a cancer takes on a really more chronic, I mean, it is a chronic illness. It just isn’t they get put under different narrative umbrellas and I guess hospital departments.

Emily: Yeah.

Right. And for me I have a palliative care doctor, and I go routinely to get treatment that is specifically cancer-related. I take medicine for my fatigue and those kinds of things, that’s an ongoing deal that other people wouldn’t necessarily have to endure
if the cancer is quote unquote gone. So I’m constantly… it’s weird because I feel like I identify very, very strongly with the chronic illness community, but also, and this is self-imposed, nobody in the chronic illness community has done this to me, but I also feel like because I have a very specific, very I don’t know what word I wanna use here. Because people don’t mess around with it. I feel like I have a sort of privilege , because of my diagnosis, over people who either 1.) Don’t have a diagnosis at all, or have these kind of outlying diagnoses that nobody really understands well, and that doctors don’t even take very seriously.
I feel like maybe I don’t belong because I have such a specific, such a very seriously taken disease. And again, I want to reiterate nobody in the chronic illness community has made me… has said anything to me to make me feel that way. I just… we internalize all of these things coming at us,
and sometimes I just sit with that feeling like I don’t deserve to be treated like… I don’t know. And then other people will be like, “Oh, well I shouldn’t complain because you’ve got cancer.” And I’m like, “No, no, no, we are all valid here.” You know?
It’s just… that’s how it is with the ableism that comes with everything.
And we’re all just sitting here processing that in like a million different ways, and
half the time doing it to ourselves, not even realizing.
Sorry, if that was a wild tangent.

Brianne: No, no, not at all. Cause I think something that happens a lot within… at least the kind of actively ill corner of the disability community, which is chronic illness and a few other… whoever else maybe is in the actively seeking care corner of disability is like…

There are a lot of privilege axes, kind of like what you’re talking about. Diagnosis is a privilege or having a diagnosis that is usually uncontested is a privilege. But
within the context of the healthcare system where anybody who is reaching these kinds of privilege tiers is also going to be someone who’s very sick.
And I don’t mean that they are sicker than anybody who has not reached them, but if you’re not sick, you’re not even a part of this conversation. So we get into these really difficult to untangle… I mean, this is when people start talking about the oppression Olympics, but I think we do it to ourselves too.
Like what you’re talking about, where it’s like, “Okay, well, I look around me and I see that the system is really hurting other people in a way that either it didn’t hurt me or it isn’t hurting me anymore,” which is part of it, right? It’s not even, like you’re saying like, “Oh, I’ve had a great medical experience.
And so when I hear about these hard ones, I feel bad because I was treated so well.” That’s not even what you’re saying, and I think we all get these narratives where we’re like, “Well, at least I got this one basic measure of human dignity in a system that is literally trying to keep all of us in the workplace, not complaining.
And that’s apparently it’s only function.”

Emily: Exactly, it goes back to me being relieved when the doctor tells me I have a brain tumor. Yeah. It’s all connected… if we’re not producing for somebody, not even just for ourselves, if we’re not producing for someone else, then we are not worthy of compassion or empathy, or even just food, shelter. I mean, it is that bad, you know? And when you spend… like I was saying, I was healthy for 30 plus years before this happened… when you spend 30 plus years steeped in that, you… I didn’t realize how… I would like to think that I wouldn’t have been that way, but I didn’t know any different. So I look back and I think, “Oh my gosh, I was kind of a horrible person. I had no concept of…”

Brianne: “There’s so much I didn’t know.”

Emily: “…how bad things could be.”

Brianne: Yeah, yeah. Or where all the cracks were, cause why would you? But I think that’s a thing in disability and chronic illness and disability communities, as we all become aware of all of the possible cracks to fall through, you realize which ones… either which ones don’t impact you or which ones don’t impact you anymore.

And you’re like, “I’m so grateful that I’m not in
that crack.”

Emily: Yeah.

Brianne: And these relative privileges are very real. I know that. I have many of them, but they’re so cursed at the same time, I guess is the point that I really wanted to make. They’re these weird cursed privileges of a busted system.

Yeah. And they impact us, I think. That was also what I wanted to go. This is what you were talking about, but they impact community relationships… intra- and inter- community relationships for patients, of how patients perceive each other and how patients see other communities represented in the media or perceive that they are treated by healthcare or whatever.
There’s all of this noise around what different people are experiencing sometimes with disability and chronic illness. Is that kind of… does that line up with… it’s okay if you also don’t remember, but that’s how I’m hearing it or that’s what it makes me think of. Yeah. Oh, brains But that made sense.
Yeah. It’s I feel like it’s interesting cause I think when I thought that I was a healthy person, which I wasn’t, it seemed like there were really impermeable diagnostic groups. Like it would be really obvious…. people who have this and people who have this and people who have this and that they would all be really similar or have a lot in common or whatever.
And I remember in, I guess, 2017 was when I stopped working, so around that time when I was undiagnosed and I was like, “Okay, cool. Who do I talk about this with? That is not clear to me at all.”

Emily: Right.

Brianne: “Because people who are diagnosed must know and just talk to each other about that.” And now I realize that that’s a little bit true, but that’s not really what it’s like either. Diagnostic labels

don’t always tell you who you are going to have the most in common with, which was a surprise to me. I think.

Emily: Yeah. That… going back to the fibromyalgia thing, it’s not that I didn’t qualify for fibromyalgia. I absolutely do. There were just things that were not being considered in with all those symptoms. But so, I kind of feel like people with fibromyalgia are my people, you know what I mean?

I identify with them, with the struggle of not being taken seriously for whatever it is. I remember a couple of years ago, back when I was first diagnosed, somebody saying, “Well, that’s just a diagnosis that doctors gave when they don’t know what you’ve got.” Yes. But you know, not always, I know.
It’s just so dismissive for you to say that to somebody, and it’s so hurtful and that was another thing I struggled with in shedding the fibromyalgia diagnosis is that I didn’t want to harm people who that was a legitimate diagnosis for them. And I don’t want everybody who gets diagnosed with fibromyalgia to automatically go, “Oh my God, what if I have a brain tumor?”
Because my circumstances are not normal.

Brianne: Yeah. Atypical. Yeah. And I

think one thing that gets lost…

Emily: So I try to balance between, you know, fibromyalgia is real. Take it seriously. Go

Brianne: ahead.

No, I was also going to just talk about fibro. Yeah. Cause I think one thing that gets lost about it is it describes a specific symptom presentation, and it also shouldn’t be given as a diagnosis unless… it’s a diagnosis of exclusion, and so the problem is that most doctors aren’t doing the exclusion that they should be doing.
And so really, fairly often it turns out to be a misdiagnosis because somebody who’s been diagnosed with fibro eventually gets enough information to have a more comprehensive diagnosis for their situation. So if they’re seronegative, if they’re preclinical or whatever, and so then we have this whole… many people who have the symptom pattern, but have a different underlying cause or a known underlying cause.
And then there’s almost certainly people who are in this category who maybe share a cause that hasn’t been discovered yet. And it’s all of these people hanging out under the same umbrella and the outside population doesn’t have any of the nuance to know why this would happen.

Emily: Right. Yeah, because they go to the doctor, they get treated and they come home and they feel better, And I’m not knocking that that’s the experience you have, until you have a different one, you can’t know what that’s like, but that was me when I was younger. I would get something I would feel really bad,

I’d go to the doctor, and, outside of like a week or, a month at the most, I would be back to what I would call normal.

Brianne: Yeah, it always helped.

Emily: Yeah. And it helps until it doesn’t, and then once it doesn’t, that’s when your eyes are really opened to the failings that are there. And I don’t think the solution is for everyone to get sick, obviously, but listen to us. There is no reason to not believe someone when they tell you they went through X, Y, and Z. I think that’s the most frustrating part of being in the system, is just the disbelief from other people because, you know, “I haven’t been through it.”

Would you tell me that you don’t think cancer exists because you’ve never been diagnosed? Probably not. Because again, we’re going back to the status of cancer, having been elevated to this big, scary thing and whatever, but people by and large, they don’t have any qualms about dismissing other things like fibro, you know, those… We can’t leave out the element that, if you’re not a white guy walking into the doctor with a complaint, chances are, there’s a whole lot of prejudice going behind how you’re being treated.
I mean, we could, talk for like five hours on that alone.

Brianne: Yeah. There’s a lot to say about it, but it’s very present, yeah.

Emily: Yeah. And I don’t feel like as a white woman, I don’t feel like I should be the one to have that conversation anyway.

Brianne: Yeah.

Emily: Cause there’s so much more that… we just got to listen to people. Why are we not listening to people who tell us when something happens?

It happens. Why are we so disbelieving of everything?

Brianne: Yeah. Yeah, well, it’s been a very… it’s a constant question for us in the chronic illness fair because we’ve been running up against it for… most of us for as long as we’ve been sick, but a question of 2020 too. I mean, and it’s a question for many marginalized communities, which is also what you’re saying, is that especially white women with chronic illness are not the only marginalized community and certainly not the most oppressed. However, a lot of these kinds of themes are coming up for a lot of people. I think just… the way the 2020 has been, has been like,…oh God, one of the tools of oppression… gaslighting is a tool of oppression. And there’s a lot of examples that we can see where it’s being used right now in big current events.

So I don’t know when this episode will come out exactly, but I suspect it will still be relevant even if it’s a month out from now or something.
Yeah. Well, thank you so much for taking the time to talk to me. I know it’s a lot of energy, and it’s always a lot of energy to revisit all of the medical crap, but I really appreciate getting that gift of energy, basically.

Emily: Oh, You’re so welcome. I mean, I’m so appreciative, of the community that you have on the Twitter. I mean, it just floors me, I’m learning something constantly because people are willing to share, and I want to be able to, I feel like just talking about stuff helps, yeah. And you don’t always know who it helps, but it helps.

Brianne: Especially on Twitter and I mean, this in a nice way, you don’t always know who’s reading. there were so many people, especially people who are chronically ill/mentally ill/neurodivergent who are like, “I don’t have words right now and getting to read other people’s word exchanges…”

This is me too, when my brain is out. It’s just so nice to get to see other people having a conversation that you can’t have in that moment, but would really like to have, yeah. It’s a good space despite all the crap of Twitter. Yeah, well, that is nice too. I like it. Thank you.

[guitar riff]

Drew: Thank you for listening to episode 72 of No End in Sight. You can find Emily on Twitter @emilyseuss.

You can find me on Twitter @fibrofuckboy and if you want to support me directly and are in a position to, I have a Patreon where I post my poetry and other artistic endeavors at patreon.com/darkmagenta. You can find Brianne on Twitter and Instagram @bennessb and you can find many more conversations about chronic illness on Twitter @RTsFromTheVoid.
And don’t forget, you can sign up to support the show over at patreon.com/noendinsight. Or if you want to support the show, but don’t have a few bucks to spare, we’d be just as grateful if you left a podcast review on Apple podcasts or iTunes. Thanks for listening.

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No End In SightBy Brianne Benness