Family Leave Act

Accupuncture for Recovery

Criminal Mind, Russian Doll, and Umbrella Academy

Libby

Caraval, Flatout Love, and The Lie Tree

What is your disorder? *

Nutcracker Syndrome

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

32

Who were you before your illness became debilitating? *

An active and happy science teacher, wife, doggy-mom, yogi

What would you do if you were not dealing with your invisible illness? *

Work, help more around the house, travel & exercise more

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

Some days are better than others, but it's still hard physically (I'm in pain a lot) and it wears on you mentally too. I have to think about everything ahead of time to determine if I can do it and if so, what modification/assistance do I need to be able to do said things. (spoon theory)

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

If the world was actually handicap-friendly and if public transportation was better in the US. Also, if people knew about invisible illnesses and were more kind and helpful to each other...I get a lot of "but you don't look sick", "but you look good", "you're so young"...etc. Finally, if I was able to work part time.

Do you have any life hacks? *

• Don't be afraid or ashamed to ask for and accept help.
• Use assistive devices like walkers, canes, wheelchairs to conserve energy and
• bedside tables/trays for a place to keep all your stuff on those days you're stuck in bed.
• Join support groups, such as those on Facebook. Sit on a stool while cooking to conserve energy.
• Buy pre-cut veggies/fruit to make cooking quicker.

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

Thankfully a lot! I literally wouldn't be alive through all this without them. Husband has taken on a lot at home to help, siblings came and visited and helped, mom took off 3 weeks to come be with me for my surgery. Other family members, friends, colleagues, and students sent cards, gifts, food, gave me rides, etc. And of course my dogs have been snuggling me like crazy to help!

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

Yes. My first vascular surgeon insisted that I couldn't possibly be having so many symptoms and so much pain from just one pinched vein. I quickly got a different vascular surgeon! (Plus I'm young, small and cute, so I often get odd looks from people when I use cane or walker and use the handicap placard)

How has your invisible illness affected your relationships? *

It's shown me who really is a good friend and who isn't. I have to decline doing some of the activities that my friends want to go do and sometimes cancel things I've rsvp-ed to if I'm not feeling well. My husband and I have ultimately grown stronger through this, but there have been stress-filled outburst at each other from time to time and we can't really be intimate since my pain is primarily in the abdominal and pelvic region.

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

I don't think anyone really understands how hard it's been both physically and mentally. I'm good at putting on a fake smile and saying "I'm ok" or mostly posting the "good days" or small accomplishments online. I'm also really nervous about returning to work after my medical leave is up.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

Yes and especially since mine is a rare disorder, even if they believe me, most of them don't really know what it is or how to help.

What is your best coping mechanism? *

Humor...and my dogs.

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

Returning to work is my answer to both of those questions.

What is your favorite swear word?

I don't really use swear words much...I tend to make up silly words instead.

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 want to spread awareness about my disorder, possible interventions like the surgery I had (renal auto-transplant) and what recovery is really like.

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

To take life slow, enjoy the simple things, and don't get upset over stupid stuff.

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

My rollator walker and/or my bedside swivel table

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A huge welcome back to my friend Dawn who has amyloidosis and for the last year has been on a drug trial. I asked her to come on to the show to talk about her experiences getting into the trial, what it has been like, what she wishes she had known before, and what will happen to her now that the trial is ending.

Important points:

Minute 24 How to talk to your doctor about medical trials

Minute 40: How to ask for a change to your trials protocol

Minute 43: The differences between a clinical trial and a investigative

Minute 44 What to pack for your comfort with infusion. Awesome ideas for even chemo gift basket

Minute 50: How to talk to your family.

Minute 54: What happens when your study ends and you move to commercial access

******These are estimates on time but should be a pretty good guide for quick reference********

• Weighted Blanket
• Eye Mask
• Fuzzy slippers
• Stainless steel thermos
• Audible, Lyft, and Airbnb gift certificate
• Ginger Chews
• Lovely easy to carry backpack with device charger
• 
  

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 Today I am interviewing Melvin Phillip a sex therapist about his upcoming book. Sex & Love When You Are Sick  will provide couples with strategies to overcome shame and the sexual limitations they are experiencing due to illness by reclaiming a sex life that works. Couples will learn to acknowledge loss, cope, and build a relationship with the illness. This book will help the couple develop the “new normal” of their partnership."

Comment below if you have any questions you would like to ask Melvin in an upcoming interview.

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Our New Chronic Health Podcast Series!!!!

Health Practitioners with chronic illnesses

For our first episode: Jodi Taub Licensed social worker Interviewed by Eva from Wellacopia representing the EastCoast branch of Invisible Not Broken

• Dealing with Polar Vortex with chronic illness
• Specializes in chronic illness mental health
• Telemedicine
• "But you don't look sick" aspect of invisible illness
• Chest ports catheter
• Invisible Illness Discrimination
• Mental health and chronic illness
• The use of online support groups
• How to cope with chronic illness for children
• Dating and chronic illness
• Out of the Invisible Illness Closet
• Show Notes
• Basic intro questions
• 
  
• ·     What is your profession? I am a Licensed Clinical Social Worker with a private practice in NYC.
• ·     What is your illness(es)? Are you ready for the list? Here goes: My Main Illness which is the reason for all of my subsequent health issues is Primary Immunodeficiency. This means that my immune system does not function appropriately/and or is missing functioning parts of my immune system. This results in severe, chronic, and hard to treat infections, mainly sinus, pulmonary, gastrointestinal, and skin, but we can always throw in a bladder infection or some other random infection each year. I receive bi-monthly infusions of Immunoglobulin Therapy, and have a chest port catheter because I often require daily, long term IV antibiotics for weeks or months at a time because I have infected bone in all of my sinuses. I have asthma and bronchiectasis, eczema, allergies, what was initially diagnosed as IBS, than Ulcerative Colitis, and now gastrointestinal issues related to PI, GERD, PCOS, chronic pain due to disk herniation and degenerative disk disease due to a car accident in 2003. I also have acquired some new diagnoses as of late: Hashimoto’s, Raynaud’s Disease, Anemia, and Androgenic Alopecia.
• ·     Where do you work? NYC and on my couch when I am not feeling well.
• ·     Who do you work with? I am very lucky to be able to combine all of my extensive work experiences into my private practice. Prior to becoming ill, I worked as a therapist in foster care and adoption and in residential centers. Later on, I completed a Post Master’s in School Social Work and was a school social worker(which also focuses on children with disabilities in the school system). I started my private practice 11.5 years ago. My private practice represents all of my 22 years of direct care experience post college. I work with children, adolescents, and adults. I conduct individual, group, couples and family therapy. In recent years, I have specialized in patients who are coping with the emotional difficulties of living with Chronic Illnesses, which is why I am here. Because of my work within the Chronic Illness community, I am also an expert speaker, and have conducted over 30 lectures across the country for patients and families who are coping with chronic illness, more specifically with PI.
• ·     What makes your approach to care unique (think Wellacopia)-I am really enjoying this time in my career. In my early years, I was in school forever, and worked really hard to try to hone my clinical skills. I am now at a point that my craft is really natural for me after 20 years. I think because I am real. I am approachable and informal. There are a lot of myths about who a therapist should and and should not be, and also about what type of personality attributes you should have. We are an eclectic profession. Community members often ask me for therapy references, and I will often hear, “Do you know of a good therapist?’ I always ask a series of questions to find out who would be the right fit. I always say, “Who would be good therapist for you?” Therapeutic style, approach, and personality are really important. We all have different personality types. Speaking to someone about your inner emotional world-the most important thing is to feel comfortable with that person. This also translates to finding your own medical care team. Some people can be a part of a larger health care system, and some individuals will require more specialized care.
•     
• 
  
• 
  
• Personal Questions:
• 
  
• ·     How did your illness shape your career? It changed the course of my career. I have suffered from all of my chronic illness which came from PI my entire life. I just thought that I had a ton of different health care conditions which were not related. When I was 30, the chronic persistent, serious infections really hit, and it changed the course of my life. Completing grad school and post graduate schools, I worked full time while hustling through. In fact, when I became really ill, I had been working at a school as a school social worker. My body was really shutting down, and I was constantly in the hospital, and having surgeries. The truth was that I could no longer work a traditional 9-5 pm schedule(And at that time in my life I was working 9-9 pm to pay my bills). It was at this time that I had two opposing supervisory job reactions. My boss at the therapeutic day school was trying to fire me to due my illness, and my supervisor at Catholic Charities wanted to do whatever she could to accomodate my circumstances. My supervisor offered for me to take on a small case load and the flexibility to set my own hours. I could work nights and weekends, and could complete paperwork at home or on a laptop during appointments. I quit the school job, and bulit my private practice while managing a caseload at Catholic Charities. Four months after I quit my school social work job, I was diagnosed with Primary Immunodeficiency, and shortly after began IVIG infusions.
• 
  
• I learned a ton from this experience. I could have become consumed by the negative experience with my school boss who was descriminating against me. I could have really been disappointed for just completing a post master’s in school social work and learning that given that I had immmune system which could not fight off germ’s, I could never work in a school again. 
• 
  
• On the other hand, I had the opportunity to begin an entrepreneurial adventure as a therapist consultant which lead me to start the private practice. There are always two ways of looking at circumstances, particularly when your journey takes a different path.
• 
  
• ·          Are you open about your illnesses with your patients? If so, were you always? Yes, I am. In fact, it is an agenda item I highlight during intake. I let all new patients know that I have a compromised immune system. I explain that if they come in with symptos of a cold or cough, I can become really ill. As an alternative, we can teleconference or reschedule for another date. This is another example of how personal modifications allow me to be gainfully employed.
• 
  
• From a personal perspective, I took me sometime, as it does with most people to come to terms with illness both professionally and personally. From a professional perspective, I wanted to maintain my practice and all of the years of work experience in my practice. In addition, I wanted some space from my illness professionally. Although, I began volunteeing with the Immune Deficiency Foundation from the onset of my illness as a guest lecturer and conducting coping skills groups nationally, I still was not seeing patients privately in my practice. Because having an impaired immmune system, impacts almost every system in my body, I have a ton of specialists. There doctors started sending patients to me who had a variety of different health care conditions, including but not limited to Chrone’s and Colitis, IBS, Lupus, Cancer, Rheumatoid Arthritis, Fybro, EDS, Lyme Disease, Allergies and Asthma, MS, Rare Disease, and PCOD just to name a few. My immunologist had been encouraging me for years to see PI patients in my practice. And now as we have increased PI patient diagnosis, I see PI patients, as well. 
• 
  
• Personally-and I talk about this with patients all the time, when to tell individuals was on a case by case basis. I realized early on how often patients with Chronic Illness can be descriminated against. I have had people sneer while wearing masks on planes, or many friends and family members who did not validate or understand my experience. If all I had to do was add some more Kale to my diet, I would have long ago been cured! As many chronic illness patients have experienced, I have had others judge make judgements about my capabilities. Just because I attended work that day does not mean that I will be exhausted and could participate in a recreational activity at night. I talk about this a lot with my patients-My illness now impacts every aspect of my life, from work to how I spend my free time, to dating. Dating can be challenging. You have to establish your own boundaries and determine when it is appropriate to tell someone and WHO is appropriate. If you tell someone before there is an attachment, and there is a connection, it may be too much. There are significant others who I told right away because we had a conection, and other’s whom I told later on, or even never told.
• 
  
• ·     What are you most passionate about in regarda to your work? Working with patients who have rare illnesses and chronic illnesses because I get it! This is why I chose to specialize in Chronic Illness. For many individuals with Invisible Chronic Illnesses, we experience descrimination. People can say really cruel things, and can make assumptions when they don’t understand how your disease manifests itself. For most people, illness has an onset/recovery model. This means that their is an onset of symptoms, you get diagnosed, and than you recover. This is the model for most short term contagious illnesses such as colds and the flu. People can also recognize some physical disabilities such as cancer, such as someone’s baldness. Most people can’t identify chronic, invisible illlnesses. When people say to me, “You don’t look sick,” in return, I ask, “What does an infection look like?” This puts us in a very difficult predicament. This means that is was likely that it took many years of suffering before you were diagnosed. Specifially, PI is now up to 15.5 years from onset of symptoms to diagnosis. This means that there was a lot of collatoral damage along the way.
• 
  
• ·     How do you handle flares while at work? Because I have so many health care conditions, there is usually some sort of health issue which I am managing daily. I practice what I preach, and I make modications to accomodate my health care lifestyle. I typically see patients in the morning, and leave a chunk of time open for paperwork, so that I have the flexibility to attend my doctor’s appointments when necessary. You saw an example of that-you came to my office while we reviewed potential topics for the podcast. I asked you if it was ok, but I lubed up and ran my IV antibiotic while you were there.
• ·     How do you handle being a practitioner, patient and your personal life? Balance. I really try to maintain the same balanced work/medical/life balance which I recommend to my patients. If I am not feeling well, I slow down. I say no, a lot. I think its important to set expectations, and if I have too much going on, I will priortize what is necssary. 
• ·     Do you tell your patients what you tell yourself/do you practice what you preach?
• ·     Has your condition made you less or more empathetic to those like you?
• ·    
• ·     How do you feel about holistic medicine? What does it mean to you? I feel that a collaborative approach is important. I work with my patient’s physicians, psychiatric nurse practioners, psychiatrists, and other care specialists to coordinate care.
• ·     Tell us about a special experience with a patients (uplifting)
• I have a PI patient who had been recently diagnosed with PI prior to college. She flew cross country, and it was really difficult to adjust to college and what this illness would mean for her. Her tranistion wad difficult. She was able to move from feelings of despair and feeling overwhelmed to a well adjusted college students. That’s why I do this. I know how hard it can be and I want to make this easier.
• ·     If you had one message to send out to every chronic illness patient out there, what would it be? Please don’t loose hope. One of the most difficult parts of living with chronic illnesses is that it can be isolating, both physically and emotionally. It is inherent to managing disease the time spent on your health or feeling ill can take you away from other things in your life. It is really important to have community. There are two types of community: Your personal medical care community and your disease specific peer community. Your community could be friends, family members, significant others, who help in different ways. I have friends whom I can talk to on the phone, and others who will pick me up from appointments and surgical procedures. Different people can be helpful in different ways. I also encourage you to connect with disease specific peers. We now live in a time when there are all sort of facebook groups. It is really important to connect with others who just get it.
• 
  
• We are having varying degrees of abilities, so what works for one person may not work for someone else. You have to find a way to have some joy in your life and on your terms. None of us chose to be sick. We did not have a choice in our genetics. However, we do have a choice in how we live and thrive despite living with our lllnesses.
• 
  
• 
  

What is your disorder?

My main disability is Chronic Fatigue Syndrome/ ME. My dad is also disabled with CFS/ ME and Fibromyalgia. I have other health problems but the main and most urgent disorders which have

affected me most are Systemic Candida, Interstitial cystitis

, and Chronic Migraines/

vision pain.

At what age did your disorder become a daily issue? When I was 16 years old and finishing my junior year of high school I suffered from

a series of migraine headaches which led to CFS/ ME. My family decided to move to

Florida to be near our giant family since my dad became disabled. I was starting to

have the same fatigue issues as my dad so my parents found a high school that

would take me part time so that I could graduate. Not only was I entering my senior

year at a new school in a new state, I was also very sick. We found as CFS doctor

nearby who started me on antiviral s and antibiotics.- At first I noticed a difference

but it was quickly followed by a her x reaction which made me have flu like

symptoms. Eventually the medicine gave me systemic candida, which I first noticed

as thrush. The infection spread throughout my entire body, even down to my nails.

Every time I ate I became extremely sick and could feel my stomach stretching from

the bloating. I was living meal to meal on an extremely strict diet. This made it

impossible to make friends as I couldn't' t eat anywhere but my own house. This was

the toughest time of my life when not only was my health a daily issue, but an

hourly issue.

Who were you before your illness became debilitating?

Before my illness I was a normal high school student. I was a fast pitch softball

pitcher being scouted by colleges, I was first chair saxophone in the school band,

on the honor roll, and had lots of friends including a boyfriend. I lost each of

these things when I got sick, all of the things that I thought defined me. With

the move to Florida I also lost my home and the dynamics of my parents. My

mom went back to work and my dad Went ̄from---being my softball coach to

couch bound.

What would you do if you were not dealing with your invisible illness? If I were not sick I would have already graduated from college, have a job, and be independent. Because of my illness I was not able to go away to

college which later became a blessing because I have been living at home and going to architecture school nearby. It has always been a dream of mine to be an architect and I love going to school. It is difficult though because each year my friends graduate as I am left behind. What is typically an 4 year degree will take my 8 years to graduate.

If my health were to improve I would love to be more involved with promoting awareness for invisible illnesses but it is all I can handle to keep my blog going.

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

Although my family faces sever health problems each day, my daily life is hilarious. Living with multiple people who are sick and not all there makes my family a sit com. I live with my mom, dad, and sister and my extended family is made up of 24 people who live within ten minutes of me. Here are some examples:

*My sister is a Michael Kohrs sales rep, alcohol marketer, business student, and professional dancer. It is a normal week for her to have her car breakdown where she was mistaken as a homeless person, pour alcohol samples poolside at the Waldorf, do her homework with a foot mouse and voice activated software due to severe fibro, and dance with Cher's personal male look alike. *My dad has been learning sign language due to severe throat pain. My grandma has been learning it with us but she accidentally flicks us off a lot. My

dad is also writing a book with his eyes closed. Because mornings are best for him dinner is usually ready by 10am.

*My grandma is our Uber. She takes me to school and doctors appointments. *Our house is a revolving door for family as they are always helping and supporting us. My aunt will often drop by with dinner, my cousins bring their dogs over, and my uncles will stop by to visit with my dad.

*I have converted the office into my personal architecture studio. of

my pain I cannot use a computer and therefore draw

by hand. I have a typewriter to write my blog and school assignments. I've gotten so good at drawing combined with my typewriter that my classmates think my work is done on the computer.

My daily life may be funny but it is also consumed by my health. I can only achieve so much in a day, have to take lots of breaks, and spend a lot of days at doctor appointments. When I got sick, every aspect of my life became public to my family and doctors. When I got Interstitial Cystitis, a bladder problem which either made me have to pee urgently and constantly or not be able to go to the bathroom at all, it was normal for my day to start with my dad asking about my pee. It became so painful and difficult to make it through class or a car ride that my family sent me to New York to see a world renown doctor for I C. Imagine seeing New York for the first time with a bathroom locater app and two disabled people. My dad looked so lost that people would come up to us on the street to help us. I wouldn't' t have wanted to experience NYC any other way though. My daily life was changed when this doctor gave me medicine that helped my pain and urgency and also recommended a pelvic floor physical therapist. At this point I spent my days in a urogynechologist office, getting bladder lavages, and doing physical therapy. What would make living and moving in the world easier for you?

Awareness and Accessibility. Living with such serious health problems which control

everything I do, having a voice on my blog has been completely liberating. Just the few people in my life who now understand a part of what I go through has made my life easier. If invisible illnesses were taken as seriously as cancer it would allow for me to not have to prove that I am sick. I went to a football game for UCF where I was denied access to a handicap parking garage by a police officer although I have a handicap placard. After that I was denied access to the handicap shuttle because I ' l am not handicap. Having people not believe me therefor making accessibility inaccessible has been a huge part of the battle.

Do you have any life hacks? We have SO MANY life hacks, most of which invented by my dad. One that stands

out is ' 'neck thing in a pant leg. " My dad cannot hold his head up and cannot join

us for meals, church, ect. if the seat he is in does not have a neck support. One

day I found him walking around the house with a slab of wood sticking out of his

shirt. It evolved into a 4 inch wide piece of wood from our garage with Velcro on

it to attach padded neck and lumbar supports. It looked like a hot mess so my dad

went to his room, cut off one of his black pant legs, and my mom sewed the pant

into a carrying case. Now he doesn't leave home without "Neck thing in a pant leg.

' t Another favorite is the foot mouse, which he made for my sister because she gets

extreme back pain from fine motor activities.

RIP my sandle, which he cut a hole in to place the mouse. Currently the most

important life hack for me has been my rose colored glasses from amazon which

protect my eyes from glare and fluorescent light. Without them I couldn't make it

through class at school without getting a migraine due to extreme light

sensitivity.

What kind of support do you get from family or friends? I have lost many friends over the years but the friends that I do have now are

amazing. Most of them have no problem if I have to cancel plans. They usually come to my house and even drive me around places. I also have friends who also suffer from ME/ CFS. Although I have been lucky to have my dad who understands all of

my struggles, it wasn't' t until I met another girl my age with the same challenges that I realized that what I needed wasn't' t a cure, it was for someone to understand. My family has been amazing, as I wrote earlier.

Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples?

I learned that people do not believe invisible illnesses from my dad. I have seen how he has faced so much before I even got sick. He grew up in a different time (1970's- 80's) when invisible illnesses were unheard of. In his 20's he went through years of being bed bound. Doctors told him he was crazy, it was all in his head, he was a hypochondriac, laughed at him, and told him that this was his bodies way of taking a break from being so ambitious and smart. He eventually learned that his problems were food related and was able to lead a normal life for many years. But because of this he has always kept his health a secret and I wasn't' t even allowed to post pictures of him on facebook because he was so paranoid. By the time I got sick I figured that was the way to live with this illness. I didn't necessarily encounter people who straight up didn't' t believe me because I never gave them the chance to know what was wrong. How has your invisible illness affected your relationships? I was engaged a year and a half ago to my absolute best friend. We had an amazing god named Sonny and our own Little apartment. When we first met I was not as disabled as I am now. There became a point in our relationship where he was my caretaker and I was hardly able to take 2 classes. I was happy though because I had

him and Sonny and a beautiful wedding dress. When he left me I thought it was my fault because I am sick. His mom texted me and told me that it wasn't fair to him that I was sick. A few months later Sonny passed away unexpectedly. Sonny was everything to me His death was devastating on top of everything. I have sense built up my self worth, started blogging, and went back to school. I now know that him leaving had nothing to do with my illness but with him. I deserve everything a normal person does, including love and a family. A part of me is still hopeful that I'll get to

have that again. But it is hard dating when I am so disabled. I have been labeled hard to get," because I cannot text/snapchat constantly due to severe eye pain, which I was honest about from the beginning. Of all the things I have been through I really just want to have my best friend back. Is there anything you are afraid to tell people in your life? Because of my illness I am very close with my family and friends. Over time I have let go of everyone who doesn't put my health and well being first. I have gotten to the point where I just say things as they are. I call this person "savage Sarah," because before my illness I was very reserved and put other people first where I now have to put myself first.

Does the fact that your disease is invisible change how healthcare professionals treat you? Heck to the yes! I often have to see multiple of the same kind of doctor before I find one that takes me seriously. For example, I have been to 3 neurologists, a pain institute, and 2 eye doctors, and a neuro ophthalmologist for the same symptom; migraine eye pain. I t ve become a pro at doctor hunting and have even had to go out of state just to find a doctor. My favorite responce for my migraines was that it sounds like I t m not trying to help myself, despite cutting out classes, not driving, wearing special glasses, going to multiple specialists, trying food, yoga, and physical therapy along with botox, epidurals, MRI s, and even injecting myself with meds. Then the next doctor I went to told me that I already tried everything and that I would just have to live with it. I never know what I am going to get when I meet a new doctor. If we

have learned one thing it's to not give up even when it seems like there is no hope. Someone out there has to know something about what I am going through.

What is your best coping mechanism? Blogging has given me control over everything I'm going through. Jesus and dogs.

What are you most concerned about and the most hopeful for the future? Biggest concern- that I won't get to be an architect. That the extraordinary measures my family have taken for me to be get an

education won't be worth it.

Most Hopeful- To become an architect and have a family I guess I am most fearful that I won' t get what I hope

able to

someday . for.

Is there anything you don't want to talk about during the interview? Because my dad thinks the drones are out to get him(joke but actually paranoid) I would like to not advertise my Last name but instead use Sarah Nicole (my middle name) .

Is there anything you want to talk about during the interview? like an organization you want to promote or something specific you deal with.

I would like to mention my blog InvisibleMEdiary.

What is the hardest/best lesson your condition has taught you? Others will try and tell you your worth, but only you can define your self worth. The past 8 years have been a rollercoaster of losing myself to learning to love myself. This illness has changed my way of seeing the world and I have grown to love the insight I have into suffering and what is truly important in life.

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

My Emily Dickinson Book of Poems.

If you have not listened to Dawn's story please do for Flashback Friday. Listen this week, Dawn will be back next week to talk about her experiences being part of a medical study.  

Invisible Illness does not get much more invisible than Dawn. I can not remember when she first told me she was sick but I promise I was shocked, even with my invisible illness spidey sense. Please listen to the end to find out the best questions to ask a sick person and why "How are you doing?" should just be removed from the conversation. We also came up with the best idea for Airbnb if they want a how to rock at helping people idea. Thank you so much for listening to Invisible Not Broken. Please subscribe to the podcast to hear more interviews and of course leave an embarrassingly glowing review on iTunes.

Until next week:

Be Kind. Be Gentle. Be a Bad Ass.

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The Emotional Side of Living with a Chronic Illness

“It's important that people know that it IS going to be OK and that there is IS possibility"' - Jodi Taub

Jodi Taub, LCSW is a psychotherapist in NYC. She has over 20 years of direct care experience with children, adolescents, and adults including individual, couples, family, and group therapy. She specializes in treating issues related to Mood and Anxiety Disorders as well as the emotional issues that arise from coping with Chronic Illness.

Jodi is also an expert lecturer, public speaker, published writer, researcher and active contributing member of the Immune Deficiency Foundation.

➡️ visit https://www.joditaubtherapy.com/

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Dr. Who

David Tennent Catherine Tate Much Ado About Nothing

Two Old Goats Lotion

What is your disorder? *

Fibromyalgia, migraines, vaso vegal syncope, ptsd w/ bipolar & borderline

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

22

Who were you before your illness became debilitating? *

A dancer, manager of a weekly goth event, life of the party, and drunk more than not

What would you do if you were not dealing with your invisible illness? *

I honestly don't know. If it suddenly disappeared tomorrow though I'd probably either run for office or work as an advocate for other spoonies.

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

It's somehow mind numbingly boring and heart attack stressful at the same time. I spend at least 75% of my time either resting/healing or treating my conditions.

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

More awareness and consideration for the difficulties in using a mobility aide, and more patience when my brain just can't find the information someone's asking me for. Basically, people need to be nicer to each other.

Do you have any life hacks? *

I probably have too many, but my biggest one is if I can't figure something out myself I ask for help be it filling out paperwork or figuring out how to get myself up on time in the mornings. It never hurts to get a few different perspectives on a problem, even if it only serves to make clear what doesn't work for you.

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

My husband and children do alot to help and support me, though both my husband and son have their own chronic physical/mental health issues, and my mother in law tries but can't quite understand so it gets frustrating. As for friends I have one or two really great spoonie friends in other countries, but there's no one local who's willing or interested in developing a friendship with the sick girl who can rarely leave her house.

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

Oh yeah! Most notably my immediate family. I began having noticeable symptoms at 15 and by 16 they'd decided I was faking and refused to take me to any more doctors and began to refer to my health problems as wimp's disease or laziness syndrome. Hence all the self medicating w/drinking in my 20s.

How has your invisible illness affected your relationships? *

It's made them all more difficult. It's like my health creates all these added obstacles to every kind of relationship, from romantic to platonic and even familial. It's 100% why I don't have a girlfriend right now, it's not worth the spoons to try to even find a girl willing to date a married woman.

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

Not like a big secret or anything, but a lot of the time I'm too afraid of upsetting or inconveniencing people to speak up when I need help. I'm working on it though. So far people haven't reacted well.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

YES!!! Some get really irritated & rude while others are so afraid of making me worse they don't even want to do anything to help.

What is your best coping mechanism? *

Distractions! Mostly watching either educational stuff, comedy, or Marvel shows & movies with a few other fandoms thrown in. #whovian4life lol

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

I worry most that I'll miss the early signs of something serious and end up even worse (happened twice already), and I pray daily for effective treatments.

What is your favorite swear word?

GodDamnMotherFuckingShit!

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.

My baby youtube channel and living in a household with multiple invisible illnesses (Fibro, CSID, CTE*probably*, and mental health)

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

IDK if it's my conditions or just life but I've learned that everyone has trauma and that even the worst people are no different from anyone else in the fact that their past experiences have shaped who they are now, and that most people are honestly trying to do the right thing we just don't all agree on what it should be and I can and should love those people as the flawed, confused humans we all are.

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

Two Old Goats lotion

Hosted on Acast. See acast.com/privacy for more information.

AprilDawn’s YouTube

AprilDawn’s Instagram

Dr. Who

David Tennent Catherine Tate Much Ado About Nothing

Two Old Goats Lotion

What is your disorder? *

Fibromyalgia, migraines, vaso vegal syncope, ptsd w/ bipolar & borderline

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

22

Who were you before your illness became debilitating? *

A dancer, manager of a weekly goth event, life of the party, and drunk more than not

What would you do if you were not dealing with your invisible illness? *

I honestly don't know. If it suddenly disappeared tomorrow though I'd probably either run for office or work as an advocate for other spoonies.

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

It's somehow mind numbingly boring and heart attack stressful at the same time. I spend at least 75% of my time either resting/healing or treating my conditions.

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

More awareness and consideration for the difficulties in using a mobility aide, and more patience when my brain just can't find the information someone's asking me for. Basically, people need to be nicer to each other.

Do you have any life hacks? *

I probably have too many, but my biggest one is if I can't figure something out myself I ask for help be it filling out paperwork or figuring out how to get myself up on time in the mornings. It never hurts to get a few different perspectives on a problem, even if it only serves to make clear what doesn't work for you.

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

My husband and children do alot to help and support me, though both my husband and son have their own chronic physical/mental health issues, and my mother in law tries but can't quite understand so it gets frustrating. As for friends I have one or two really great spoonie friends in other countries, but there's no one local who's willing or interested in developing a friendship with the sick girl who can rarely leave her house.

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

Oh yeah! Most notably my immediate family. I began having noticeable symptoms at 15 and by 16 they'd decided I was faking and refused to take me to any more doctors and began to refer to my health problems as wimp's disease or laziness syndrome. Hence all the self medicating w/drinking in my 20s.

How has your invisible illness affected your relationships? *

It's made them all more difficult. It's like my health creates all these added obstacles to every kind of relationship, from romantic to platonic and even familial. It's 100% why I don't have a girlfriend right now, it's not worth the spoons to try to even find a girl willing to date a married woman.

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

Not like a big secret or anything, but a lot of the time I'm too afraid of upsetting or inconveniencing people to speak up when I need help. I'm working on it though. So far people haven't reacted well.

Does the fact that your disease is invisible change how healthcare professionals treat you? *

YES!!! Some get really irritated & rude while others are so afraid of making me worse they don't even want to do anything to help.

What is your best coping mechanism? *

Distractions! Mostly watching either educational stuff, comedy, or Marvel shows & movies with a few other fandoms thrown in. #whovian4life lol

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

I worry most that I'll miss the early signs of something serious and end up even worse (happened twice already), and I pray daily for effective treatments.

What is your favorite swear word?

GodDamnMotherFuckingShit!

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.

My baby youtube channel and living in a household with multiple invisible illnesses (Fibro, CSID, CTE*probably*, and mental health)

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

IDK if it's my conditions or just life but I've learned that everyone has trauma and that even the worst people are no different from anyone else in the fact that their past experiences have shaped who they are now, and that most people are honestly trying to do the right thing we just don't all agree on what it should be and I can and should love those people as the flawed, confused humans we all are.

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

Two Old Goats lotion

Children living with chronic illness may feel isolated because of their condition. Frequent hospital visits and deficient immune systems often cause them to miss time in school and recreational activities. Families, overwhelmed by the cost and demands of ongoing medical care, often lack the resources to seek out or afford extracurricular activities. Healthy siblings are affected too when family resources are focused on a chronically ill child. CoachArt supports these families by offering free recreational lessons that bring a sense of normalcy back into their lives.

Since 2001, CoachArt has matched volunteer coaches with students for one-on-one or group lessons in arts and athletics. Our vision is that one day every family impacted by chronic illness will be connected to a community of support and an opportunity to learn and grow together.

https://coachart.org/

Hosted on Acast. See acast.com/privacy for more information.