Angelique’s Story

Hi! My names Angelique, I have chronic migraines, fatigue, and Pots! Ive been diagnosed with chronic migraines and fatigue at 11 years old, and i was diagnosed with POTS this year! Everyone told me i was just self diagnosing and i didn’t have it, until i started going to the doctors to go get treated and they told me i didn’t have it. It was hard knowing that nobody would understand what i have been going through but i knew ill find someone who would find out that i had these illnesses. I told myself everyday “Why is everything wrong with me? why cant i be normal?” I was normal just in a different way. Ive been in and out of the hospital for tests when i was 12 and now after my last doctors appointment i’ve been diagnosed with POTS! Its been hard trying to figure out how to take care of myself but i’ve been doing good. My family only speaks Spanish so it was hard telling them. Its only been hard because im the only one in the family with these illnesses. I know i got this and you do too! 

Remember that even if you have an illness that you’ll have your whole life; you still are normal in a unique way. Nothing is wrong with you. 

Esmaye’s Story

POTS, neurocardiogenic syncope, autonomic dysfunction, scoliosis, hEDS

Hi my name is esmaye, I developed multiple cronic illnesses at a young age. We discovered I have POTS, neurocardiogenic syncope, and autonomic disfunction a few years ago. They believe I developed it from when I had mono as a young child. Everyday I struggle with simply standing. I pass out and have seizures that we belive are linked to my autonomic dysfunction. I have scoliosis, and I'm a dancer and it causes severe pain. I also have hEDS, and I've injured myself many times due to not have strong cartilage. I also have endometriosis, every month I go through agonizing pain that has put me in the hospital. I was told for years all of it was just because of my anxiety, but I listened to my gut because I new it wasn't. I'm currently trying to get a diagnosis for my tics, they are unsure of what it is at the moment. 

Bayan’s Story

Epilepsy

So, in late 2022, while attending a relative's graduation dinner, I suddenly collapsed from my chair and began having a seizure. That is not my memory, but what those who saw me told me, as I don't remember what happened. Everyone gathered around me and started splashing water on my face to wake me up or bring me back, but they didn't know what to do out of pure fear—especially since I hadn't been diagnosed with any condition at the time. After a few minutes, I woke up, completely unaware of what had occurred, and asked them what was wrong. They said I had a seizure, though they didn't know why. They took me to the ER, but the examination was very brief. They just gave me an IV and sent me home without a proper diagnosis.

I continued my life as if nothing had happened. But a few days later, during the last period at school—I was in my final year of middle school—I rested my head on my desk. Everyone thought I was sleeping, but it was actually another seizure. The seizure weren't obvious, and I was completely unconscious. Near the end of the class, the teacher called my name to wake me up, but I didn't respond. Assuming I was just asleep, she asked my friend to shake my shoulder, but I still didn't react. Everyone started to panic. The teacher came over and tried to wake me, then lifted my shoulder to check on me, and that was when they realized I was having a seizure. The movements were so subtle that no one noticed, especially since the lights were off and the classroom was dark.

They carried me on a chair to the counselor's office and called both my father and an ambulance. Meanwhile, they kept trying to wake me up by splashing water and shaking my shoulders. When I finally woke up, I was only half-conscious, and they gave me some sweets thinking it was a drop in blood sugar. The paramedics arrived at the same time as my father. They checked my temperature and blood sugar first—I still don't know why everyone assumed it was low blood sugar. They were about to take me to the hospital, but my dad was already there and took me home to rest first before heading to the clinic. When we went, most hospitals were careless and failed to give me a diagnosis.

The ironic thing is that exactly one week later, on the same day of the week, I fell and had another seizure at school. This time, it was much severe than before. I suffered a deep cut on my eyebrow that required 11 stitches and left a large bruise over my left eye. It was far worse because I didn't wake up quickly and couldn't move, so they had to call an ambulance. They took me to a major hospital, ran comprehensive tests, and finally diagnosed me with epilepsy.

I couldn't accept the diagnosis. I felt lost, terrified, and completely broken. Ever since that day, I was in a state of deep trauma and couldn't face the reality of my condition. A few weeks—or maybe a month—later, out of sheer denial, I stopped taking my medication without telling my family. Because of that, I had another seizure at school. You can only imagine the toll of having all these seizures within just a month and a half. It was one trauma after another, compounded by my complete refusal to accept the illness.

I graduated from middle school viewing myself through a completely different lens. I didn't like who I was, I couldn't feel any joy during my graduation, and I didn't even have friends to support me. Maybe I was depressed; all I know is that I felt entirely dimmed inside.

When I entered high school, I had to explain my condition to the school nurse just for safety precautions. I remember that moment so vividly because I was still in trauma, trying to explain my situation while swallowing a heavy lump in my throat.

Two and a half years passed, thank God, completely seizure-free while staying consistent with my treatment. Yet throughout that entire time, I remained extremely sensitive whenever anyone brought up my condition—I always felt as though people were looking at me with pity. However, high school became a turning point for me. I decided to try to accept it and face it head-on. It was hard, but at least I tried. I also made new classmates, which greatly improved my mental well-being. One of them became my biggest supporter; she was always there to listen to me and my stories, and she helped pull me out of the sinkhole of low self-confidence and denial.

After two years of high school, during my final year, another seizure struck out of nowhere—after nearly three years without a single episode. Luckily, it happened at home. You might wonder why, after years of stability? Because it was my senior year. In my country, you have to work extremely hard in your final year and pass two major standardized exams with high scores to get into university. I was putting immense pressure on myself from both schoolwork and exam preparation. Due to the stress, I neglected my medication, which triggered a sudden seizure after a long period of stability.

All the painful memories came flooding back, but I was stronger this time. I pulled through and continued my life as normal. Although I felt guilty for neglecting my medication, my mental state was much better than before, and I had learned to live with it. I say I've learned to live with it, but truth be told, I still hate hearing the name of the illness to this day. I aspire to fully accept it and make peace with it, though I know I'm not quite there yet.

In the end, this journey has taught me so much. It opened my eyes to things I used to overlook, almost like a wake-up call to reality. I walked away from everyone who made fun of me or my condition. I recognized many fake people, but at the same time, God blessed me with beautiful company—true friends who stood by me and supported me.

Now, I am writing this as a first-year university student. Even though university separated us due to different majors, we are still close friends, stronger than ever, and I love them with all my heart.

Skylar’s Story

Hi my name is Skylar I am 31 I have had back pain since I was in the 2nd grade when it became the end of 4th grade I began to have headaches and soon after I had headaches EVERY day and back pain  EVERY day and then I when to a chiropractor and found out I had scoliosis and towards the end of fifth grade I found out I had spinal stenosis then in the middle of 7th grade the end of 2nd semester I had migraines every day and went to a Doctor Who said it was because I had stress going on in my household ( I have a sister who has mental disorders and her behavior is really bad she is in and out of the mental hospital for threatening) then I went to a neurosurgeon, and before going to them, I had done many MRIs they found. I had chiari malformation that was 5mm which is on the cusp of where you can be diagnosed when we had gone to see him. He said I did not have it without doing any more test but we didn’t believe him. We did another MRI and stopped seeing him so he never got the results of those MRI then we went to a chiari  specialist within five minutes of seeing her they diagnosed with chiari maffirmation and tethered cord The couple things she did were test my balance, which is really bad. She heard all of my symptoms which are at least 20 or more than she tested how I walked and how I stand in how my MRI results came back I in fact was not 5mm I was 7 and 1/2 mm and now I am getting a brain surgery for the chiari which is called decompression surgery then I’m getting a surgery for the tethered cord. We don’t have any dates yet, but they’re gonna be within the next year. So in total in the last three years, I have been diagnosed with scoliosis, spinal stenosis, tethered cord, and chiari malformation. However, the. Chiari is not curable. I will get some relief hopefully. 

Lynne’s Story

APS, Chronic Fatigue, Raynaud’s, Chronic Migraines, Perthes Disease

Hi I’m Lynne from Scotland I have Antiphospholipid syndrome (APS), Myalgic Encephalomyelitis also known as chronic fatigue syndrome, raynauds and chronic migraines. I also have perthes disease it isn’t considered a chronic illness because it isn’t supposed to be a long term condition but I am apart of the small percentage that will be affected by it for the rest of my life. I was diagnosed with raynauds when I was 4 because of symptoms I had had since I was born like raised inflammation. I was then diagnosed with perthes disease when I was 6 after me constantly limping and complaining about having a sore hip. When I was 12 I was diagnosed with myalgic Encephalomyelitis syndrome. This can lay dormant in your body for years and when I got covid for the second time is when I realised that my pain wasn’t going away. ( my younger sister, aunt and uncle have M.E as well) I was 13 when I was told I had suspected chronic migraines but they still say they can’t confirm or deny Bex it could be possibly be other symptoms of my M.E. Finally when I was 15 I was diagnosed with Antiphospholipid syndrome after multiple blood tests, 2 mri’s and a ECG. Let’s just say I have had countless nights in hospital and referrals to specialists.

Mikala’s Story

Fibromyalgia, Hypermobility, Chronic Pain, and Thyroid Autoimmunity

Looking back, my symptoms did not start in adulthood. They started in childhood. As a kid, I was frequently in pain. I had joint pain, muscle aches, headaches, stomach issues, and overwhelming fatigue that never seemed to have a clear explanation. I bruised easily, got injured often, and pulled muscles more times than seemed normal. I was flexible in ways that were praised, but that flexibility came with frequent pain and instability.

Emotionally and physically, I learned very early how to push through discomfort. I grew up in an environment where being “fine” mattered more than being okay, so I adapted. I learned to function no matter how I felt. That skill served me for a long time, but it also meant my symptoms were easy to dismiss, even by myself.

Through my teens and early adulthood, the pattern continued. Chronic pain became my baseline. I had frequent migraines, muscle spasms, joint pain, gastrointestinal problems, and extreme fatigue. I struggled with brain fog, word-finding difficulty, and periods of dizziness or feeling faint, especially when standing or under stress. I got sick easily and took longer to recover. I assumed this was just how my body was.

I went on to build a full life anyway. I became a teacher, something I had wanted since childhood, and poured myself into my work. I also became a parent. I worked full time, went to school, and managed responsibilities that often felt like too much, but I kept going. I quietly modified everything. How I moved, how I rested, how I planned my days. From the outside, I looked functional. On the inside, I was surviving.

It was not until my late 20s that things began to unravel enough to force answers. My pain escalated. My fatigue became crushing. I developed worsening dizziness, tachycardia, tremors, and autonomic symptoms. My migraines intensified. My cognitive symptoms became harder to hide. I began needing regular spinal injections and nerve ablations for degenerative facet pain. These are procedures I tolerated calmly, even though I am terrified of needles, because they allowed me to function.

Eventually, the pattern was named.

I was diagnosed with fibromyalgia, hypermobility, chronic pain, and later thyroid autoimmunity. I began experiencing symptoms consistent with dysautonomia. Suddenly, my lifelong experiences had context. The pain was not random. The fatigue was not a personal failing. The reason I could handle extreme procedures was not high pain tolerance. It was long-term adaptation to constant pain.

Now I am in a phase many people with chronic illness recognize. My labs do not always look dramatic, but my body tells the truth every day. I am learning to listen earlier, rest sooner, and accept support without guilt. I am also learning to grieve the years I spent thinking this was all normal and the parts of myself that had to grow up too fast.

Sharing my story feels important because I know there are others who are still functioning, still showing up, and still being told they are fine while quietly carrying symptoms that began long before a diagnosis ever appeared.

Aubrey’s Story

Hi im Aubrey im 17 years old and I was recently diagnosed with vasovagal syncope and chronic fatigue syndrome some days I find it hard to get out of bed I've missed so much school last year im finally a senior in highschool now it all started when I was in 10th grade year of highschool and I fainted in front of my guy best friend which now we are dating and he knows what to do if I have one of my flare ups he has been a very big help when it comes to my physical health when it comes to me having dysautonomia he gets me salty things he used to buy me redbulls but now he don't buy me redbulls anymore he buys me sprite and electrolytes and other snacks I can have it really is a big help when you have people there to support you when you have physical and even mental health issues my boyfriend makes sure I eat and sleep even on days that im having a hard time eating and sleeping.

Ellie’s Story

FND

My name is Ellie, I’m 21 and started having unexplained seizures in 2023. In march 2024 I was diagnosed with functional neurological disorder. With my illness I suffer from limited mobility, full or partial body paralysis, memory loss and  vocal and bodily tics. Some days I am unable to walk properly and look like I’m on a jiggle board when trying to walk. When I received my diagnoses I lost my job and my driving license which were really important to me. When I got my diagnosis and still to this day, I get told I am faking it, it’s all in my head and have to explain to doctors and nurses what it is. Until recently this year I was in denial about my disorder as I couldn’t accept my life and body would never be the same. 0.05% to 0.2% of the population has FND so it felt extremely lonely. There isn’t a cure for FND, all you can do is learn to manage your symptoms and embrace your new normal. I don’t have much of a story to tell as I fell into really deep depression after my diagnosis and have only just come out the other side. I’m mainly emailing to help raise awareness and to be there for other people who feel the same way I do, who couldn’t come to terms with their new normal with their illness. I was lucky enough not to have to wait more than a year to be seen by the persistent physical symptoms service in County Durham England. If it wasn’t for this team, there kindness and patience’s I don’t know what I would have done.

Kara’s Story

Hi, I'm Kara. I've been chronically ill from pretty much birth (low heart rate and emergency c section). For years, doctors have called me lazy or simply reduced me to over the counter pain meds and "just lose weight". Once I turned 18, I began to raise hell to finally get answers to my issues. As a kid, I was diagnosed with hypothyroid. Then came pre-diabetes, then fatty liver, kidney disease etc. A couple years ago now, I finally got diagnosed with Thalassemia (rare genetic blood disease that makes my RBCs deformed and can't carry oxygen and iron builds up in my blood). Any time I mention it to a new doctor for my history, they say I'm lying because it is barely heard of outside of the Mediterranean area. Every day is a struggle to even wake up or fall asleep, let alone the long periods of standing and heavy lifting for work. I try not to make a huge deal about my conditions because people look at me different if they know I'm sick or in pain. After a while, it takes a toll on my mental health because I shouldn't have to smile through the pain to the point of being unable to stand or be far from a bathroom. I guess my point is in sharing this is to let others know they aren't alone. Unfortunately I've come to a sad truth, no one will truly understand chronic illness unless they too are chronically ill.

Kai’s Story

It all started when my PE teacher noticed that something was wrong with my feet I think more specifically I had high arches or something and she noticed that I struggled to walk a bit and she told my mam so my mam as most parents would do is get me a doctors appointment and that was the start of my diagnosis journey. Doctors constantly moved me around doctor to doctor and we still got no answers to what was wrong with me. A lot of doctors constantly medically gaslighted us and blaming whatever was going on with me was because of my mother's "bad childhood" which honestly I do not understand how. I eventually met a physiotherapist named Emma she was the only one who would listen and she would brighten up my day. When I was around 9 or 10 im not 100% sure how old I was but we met this doctor after being transferred to a bunch of doctors constantly getting dismissed but finally we found the right doctor who diagnosed me with hEDS although there was suspicion that I had multiple physical problems but no one knew what. I got clinically diagnosed with hereditary spastic paraplegia but of course it wasn't a proper diagnosis and just a clinical one. I've been called a mystery pretty much my entire life and then in early 2019 I got surgery after I saw a surgeon and he said he could try to straighten my feet at the time so I got the surgery and it took a while to recover and I stayed in hospital for around a week but with the help of my classmates, friends and family at the time I got through it. After I got through all that, secondary school came and it was honestly the worst year's of my life I finally got my diagnosis for autism which was good to know of course. Year 7 was good apart from not really being able to join in PE when they had the trampolines out or just in general, but year 8 was terrible because I stopped going to school for a while because walking around school was just to much for me as it was a big place so I was in flare ups quite often because of it. Year 9 was probably when my mental health started getting so much worse, I ended up self harming all the time, panic attacks constantly but I pushed through Year 9 and kept trying everyday to just get through it which I am so thankful for my teachers and my friends for helping as much as they could when I couldn't help myself. Year 9 was also when my foot deformities started getting so much worse and my ankle kept turning on me, I then found out that I needed more surgery and so from then it was a pretty big waiting list but the day finally came on may 10th 2024. By this part I was in year 10 but I couldn't go a week with being in school and it was rare for me to be in school. My surgery this time was for the same thing in 2019 and this time I had a bit of a better experience in the hospital, I was in there for a week although this time I was completely not able to weightbare because it would ruin my surgery so I was of my feet for a while. I was then under anesthesia 2 more times after that all in a few weeks although I dont really remember why but I know one of the times was because they needed to put my foot in a better position and to check my foot because my body wouldn't relax even with the laughing gas I had. Then when I was starting to get on my feet more and I was feeling good and was able to take care of myself more I then needed another surgery in 2025 because they needed to lengthen my achillies heal which I was on my feet quicker then other times which im glad about because right now im on my feet. But of course my legs had to give me other problems, my right knee is very painful and I struggle to walk on it at the minute and my legs keep giving up on me and I have an appointment with my surgeon on the 22nd of June which im very worried about because of how bad everything is. Although I am now 17 and I have made it so far and I have been able to apply for college and started getting my life back. I wanted to share my story because maybe someone out there will relate to it and feel comfort in knowing that they arent alone in this and theres so many people who are also struggling to get their lives back. My goal in life right now is to help kids like me that didn't get that support when I was a kid.

Lily’s Story

POTS

 It started in my junior year of high school, on a day that was supposed to be completely normal. I was sitting in class, taking a test, when out of nowhere a sharp, unbearable pain hit my stomach. Before I could even process what was happening, I passed out.

      I was rushed to the hospital. They ran tests, did an EKG, and told me everything looked “normal.” I was sent home to rest, but something wasn’t right. The pain didn’t go away it kept coming back, stronger each time. We went to a different hospital, hoping for answers, but I was told it was “just anxiety.”

     The next day, everything got worse. I couldn’t move. I couldn’t get out of bed. The pain had completely taken over my body. When we went back to the hospital, things suddenly became urgent. I was rushed into emergency surgery to remove my appendix. They said it was appendicitis.

      After surgery, I went home expecting to feel better. I thought that was the answer that everything would finally go back to normal. But it didn’t. The pain never left. That’s when the long journey really began.

     I went from doctor to doctor, specialist to specialist, test after test, searching for something anything that could explain why I still felt so sick. Eventually, I was diagnosed with celiac disease. At the time, I was eating a lot of gluten, so it made sense. I finally had an answer, and I felt hopeful. I completely cut gluten out of my diet and waited to feel like myself again. But I never did.

     Instead, I got worse. I became bedridden. Simple things like going to the store felt impossible. My body was constantly in fight-or-flight mode, like I was stuck in survival. Panic attacks started happening multiple times a day. I had to take medical leave for the rest of my junior year.

        Senior year came, and I transferred to a smaller school, hoping a fresh start would help. Even just getting out of the house each day was a battle, but slowly, I started to push through. It wasn’t easy, but I made friends. I even went on vacation. For a moment, it felt like I was getting pieces of my life back. I graduated.

      After graduation, my boyfriend of three years and I moved to another state. We got jobs. We were doing well. Life felt like it was finally moving forward again. And then, the symptoms came back. 

      I started feeling sick all over again just like before. I went back to doctors, switched providers, and kept searching for answers. That’s when I was tested for POTS and finally diagnosed.

     I’m still new to this diagnosis, still learning what it means for my body and my life. There are days when I feel like I’m improving, like I’m getting stronger. But there are also days when everything comes crashing back, and I’m reminded that this journey isn’t over yet.

     I’m still searching. Still fighting. Still learning how to live in a body that doesn’t always cooperate. But I’m here. And I’m not giving up.

Monya’s Story

Psoriasis

I’m Monya. I’m an Asian adoptee, so I’ve grown up without any medical history to reference. In high school, I had mono, and not long after that I developed psoriasis — which was the beginning of a much bigger health journey than I ever expected.

My skin is now clear, but what people often don’t see is that the pain and inflammation never fully went away. Even when the visible symptoms improved, my body kept telling me something was still wrong.

Right now, I’m in the process of trying to get a more accurate diagnosis. I’ve been on Cosentyx for the past year and have had to navigate insurance issues, doctors who didn’t believe me, and multiple medications that haven’t helped the way I hoped.

For a long time, I kept all of this to myself because I was afraid of how people would see me. I was afraid of rejection, afraid of being treated differently, and afraid that people would only see the symptoms instead of seeing me. Because of that, I became good at hiding what I was going through, even when it was affecting me every single day. I’m still learning what my body is trying to tell me, but for the first time, I’m ready to stop hiding it.

Dylan’s Story

POTS, Fibromyalgia, Gastroparesis, Chiari Malformation

Growing up, I was very active. I did Ballet and other styles of dance from the ages of 3 until I was 21. On my 21st birthday I noticed symptoms of tachycardia. I kept track of them on my watch and I noticed that my heart rate got up to 198bpm.  I went to the emergency room multiple times after that and after a month of testing, I was officially diagnosed with POTS. A few months later after having a brain MRI, they accidentally found my chiari malformation. I was untreated for that for five years, but I’ll get to that in a bit. I then went three years of having chronic pain and not knowing why. I finally was able to go to the pain management center attached to my local hospital and was officially diagnosed with fibromyalgia. About a year later, I started having stomach issues and throwing up everyday and was diagnosed with gastroparesis. In late 2023, I noticed I was having bradycardia. After months of trial and error with medication, and lifestyle changes, I had a pacemaker implanted in January of 2024. Finally in 2025, I got a second opinion on my chiari malformation and they decided I needed surgery to decompress it. I had the decompression surgery in May 2025, and since then I have been documenting my journey on TikTok. I love the community that I have become a part of so much. I’m so grateful for The Chronic Club spreading awareness for everything we go through! After 6 years dealing with chronic illnesses, I know now that I’m not going through this alone. 

I knew something was wrong. No one listened.

For as long as I can remember, my body felt harder to live in than it should have.

Not in a dramatic, obvious way. It was quieter than that. It was the kind of discomfort you slowly get used to because everyone around you tells you it is normal.

When I got my first period at 11, it was immediately clear something wasn’t right. The pain was intense. The bleeding was heavy. I missed school and felt like I was constantly trying to keep up with a body that was working against me. But every time I brought it up, I was told the same things. Some version of “this is just how it is” or “it’s probably your weight.”

So I learned to deal with it.

That pattern followed me into college, when a new set of symptoms started to take over. I was exhausted all the time. I struggled to think clearly. I also had gained weight and had adult onset acne. It may be silly, but seeing my body changed bothered me. My body felt unpredictable and off in ways I could not explain. I went to doctors, tried to describe what I was experiencing, and hoped someone would take a closer look.

They didn’t.

It was still about my weight. Still about stress. Still something I was expected to fix on my own.I did not start getting answers until I was 23, when my symptoms escalated to the point where they could not be ignored anymore. That is when I was diagnosed with Hashimoto’s thyroiditis. It was the first time someone acknowledged that something real was happening in my body.

But instead of feeling fully relieved, I kept thinking about how long it took to get there.

I pushed again about my periods, which had never improved. The pain, the bleeding, the disruption to my life had been there for over a decade. But even then, I was not taken seriously until I lied. I told them I wanted to get pregnant.That was the moment everything changed. Suddenly, I was referred out. Suddenly, there was urgency. And eventually, I was diagnosed with endometriosis.

There was validation in that diagnosis, but also anger. I had spent years being dismissed for symptoms that were very real. The only difference now was that my pain had been framed in a way that aligned with what the system values. Not my wellbeing. My ability to have children.

Around the same time, doctors began closely monitoring my thyroid and found more than ten nodules. That raised concern, but it also pushed me to start asking deeper questions. By then, I had learned something important: If I wanted answers, I was going to have to look for them myself. That is how I found Cowden’s disease.

When I brought it up, I was not met with curiosity or even cautious consideration. I was told I was anxious. I was told I was searching for problems. A genetic counselor told me it was not worth testing for.  I had already spent too many years being wrongfully dismissed to stop there.

So I pushed for testing anyway.

And I was right.

I was diagnosed with Cowden’s disease, a condition that significantly increases the risk of several cancers, including endometrial cancer. For the first time, everything connected. The thyroid issues. The gynecological symptoms. The patterns that no one else had taken the time to piece together.

But that clarity came with a new reality. I was now someone living with a condition that required serious monitoring and difficult decisions.

I do not want children. I never have.

I also have endometriosis, a significantly increased risk of uterine cancer, and a history of bleeding so severe that I faint.

And still, when I brought up the possibility of a hysterectomy, I was told no.

Not because it was not medically relevant. Not because it would not reduce risk or improve my quality of life. But because I might meet a man one day who would want kids.

It is hard to explain what it feels like to hear that.

To sit there, knowing your body, your risks, your daily reality, and be told that a hypothetical man’s future preferences matter more than your current health.

This is what medical misogyny looks like in practice.

It is not always obvious. It does not always sound cruel. Sometimes it is framed as caution or concern. But underneath it is a pattern. Women’s pain is minimized. Their symptoms are questioned. Their autonomy is treated as something flexible.

I lived for years being told my symptoms were not serious. That they were explainable. That they were my fault. And when I finally trusted myself enough to push for answers, I was labeled anxious, overdramatic, and by one doctor "a bitch".

This is not rare. It is happening to people every day.

We need to start believing people when they say something is wrong. Not after years of escalation. Not after they learn how to say the “right” thing to be taken seriously. The first time.

We need to take a harder look at how bias shows up in medicine, especially when it comes to women’s health and bodies that do not fit narrow expectations.

And we need more awareness of conditions like Cowden’s disease. It may be rare, but the consequences of missing it are serious. It carries real cancer risks. It requires monitoring. It requires attention.

You cannot treat what you refuse to recognize.

I am now pursuing a PhD and doing research in health psychology, and this is a big part of why. My experience is not separate from my work. It is what drives it. I want to understand how this keeps happening and how we can do better.

Because no one should have to fight this hard to be believed.

And no one should have to become their own doctor, get trained on reading scientific literature, and take graduate level health sciences courses just to understand in their own body.

• Alexis

Gabby’s Story

UC, RA & POTS

I was 4 when I was diagnosed with Ulcerative Colitis. They had put me on many medication that did absolutely nothing for me until I was finally put on Remicade infusions and everything was smooth sailing from there or so I thought. At age 13 my doctor decided I was doing so well that I got go from every 4 weeks to every 6 week infusions. I thought that was amazing since I don’t have to go to the doctor as often until I was in so much pain. I do dance (mainly ballet) and it has always been my favorite thing to do since I started at age three but since the pain which was in my hip wouldn’t go away I had to stop. I went to many physical therapy places and had to take Tylenol constantly and it reached a point where I could barely walk. Later after an MRI scan it turned out I had Rheumatoid Arthritis in my hip joints. It felt reliving to hear since I had always known it was that even though people didn’t believe me. I had to stop dancing completely and I lost my sense of self. Dance was the only thing I was good at and loved to do. It had always been apart of my life that everyone knows me as “the dancer” and it was really heartbreaking to say goodbye to it. A year later I was feeling much better since I switched back to every 4 week infusions until I had started high school. My school is huge and all my classes are super far away from each other. I had developed some really abnormal symptoms like my heart racing for no reason, dizziness ,vertigo, nausea and all that fun stuff. I when to the doctor and was told that it was anemia and she gave me some iron pills and that was that. The doctor that I saw was not my normal doctor since she was on vacation but when my symptoms didn’t get better she told me it was POTS. It’s a daily struggle since I hide my pain so she’ll nobody understands when I can’t take it anymore and then I break down “you were fine a second ago” they would say. So many times I get so many stupid and unnecessary advice and comments about how I don’t need my accommodations like using the school elevator only used by teachers and staff. I know they have good intentions but nobody understands unless they have been through it too.

Skye’s Story

Kidney stones, Fibromyalgia, & Type II Diabetes

Hi! I’m Skye, no stranger to chronic illness, living with medullary sponge kidney with recurring kidney stones, fibromyalgia, and type II diabetes. 

My story starts in 1st grade with chronic stomach issues that manifested itself into generalized anxiety disorder. My parents managed that as best they could through elementary school, and then came middle school. Sixth grade my anxiety was amplified due to being bullied which naturally caused my stomach issues to follow suit. I developed stomach ulcers, gastritis, and IBS-C. Forced by health to miss a lot of school, I was homeschooled my seventh grade year, but returned to school for eighth grade. What was supposed to be the most exciting time of entering high school, turned into my worst nightmare. 

Struggling through the first semester of ninth grade with my stomach issues getting worse, I was still able to keep my gpa above 3.0. However, again, due to my continued missed days of school, I was forced to go online with my second semester of freshman year. In March, three months before the end of the school year and just two months after turning fifteen, I experienced the worst pain of my life, pain the doctors at the ER dismissed as constipation two days in a row. On the third day, they found a 4mm kidney stone.

My continued stomach issues required us to seek treatment at a larger hospital with more specialists at Helen DeVos is Grand Rapids. Throughout multiple visits over three years I went through a ton of different tests, submitted too many stool samples, survived several endoscopies, and many hated colonoscopies. I also qualified to participate in a brand new treatment for IBS that was only offered at a few hospitals called IB-stim. IB-stim is a treatment that uses electrical impulses to the cranial nerves through my ear. Unfortunately that treatment didn't work for me like my doctor had hoped. Before my last colonoscopy in Grand Rapids, my fecal calprotectant was extremely elevated, which means one of two things, Crohn's or Colitis. But once again, “everything came back looking good”. 

As my sophomore year was approaching I still had high hopes of fulfilling my dreams of playing softball in college while becoming a physical therapist. But this life threw me into a medical field that I didn't ask for, learning what every lab means, understanding all the medical terms, researching all the medicine, knowing too much about my veins like how deep they are and which is best for poking, what buttons to push on all the machines, and becoming friends with nurses, doctors, cleaning personal, ultrasound techs, transporters, and cafe workers. Before long, I was trading dugouts for doctors’ offices, the crack of bats and the dust of softball diamonds gave way to the quiet hum of vital machines. My mitts and catchers gear were replaced by gowns, needle pricks, and the sterile glow of hospital corridors. 

I was hospitalized several times over the next year with kidney stones. I went through my first lithotripsy and stent placement at 16. That stent placement sent me right back to the hospital as I couldn't pass any urine. That won me another stay in the hospital. Around the same time I started developing mouth ulcers, so painful I couldn't even brush my teeth, eat, or hardly drink. 

Still not fully convinced I didn't have IBD, we opted for bigger and better, drove east about 4 hours to Cleveland Clinic. There I met with my gastroenterologist who ordered a capsule endoscopy to fully check for Crohn’s…..but, yep, you guessed it, “everything came back looking good”. I was then referred to Pediatric Rheumatology. 

I was negative for Lupus and she wasn't sure it was Behcet’s, that is when I learned I was on the verge of an autoimmune disease and at this point they just started treating symptoms. I was put on Humaria for my mouth ulcers and that ultimately helped my gastro issue as well. I will sometimes still get a break through mouth ulcer but that's not been very often over the 2+ years I have been on this medicine. 

However, I was still fighting kidney pain. In and out the ER, week after week, with them telling me my kidneys were full of stones but they weren’t blocking anything so they shouldn't be causing pain. Well, just because they shouldn’t, doesn't mean they don't. Again, not satisfied with the urologist and nephrologist’s conclusions, we headed back to Cleveland. I was put on two medicines to help stop the formation of kidney stones and diagnosed with medullary sponge kidney of both kidneys. Meaning, my kidney stones are not forming due to diet, drinking pop, and not enough water, like the local urologist tried to tell me, a 15 year old athlete. My kidneys will forever make stones because of their spongey nature. My urologist suggested doing a lithotripsy on both kidneys, separate times, to blast the stones in there that she can see. So, that is what I did. 

February 21st my mom and I traveled to Cleveland Clinic to have this procedure done on the left kidney. What she found was a stone blocking one of the ducts of my kidney. She blasted it along with some other ones but needed to place a stent, unfortunately, that would be removed in a week. The pain afterward was unimaginable, which I remembered from the last one, and if anyone has ever had a ureter stent, we all say the same thing that it hurts worse than the kidney stone itself. But what I never expected to happen was being hospitalized locally, just five days later being the sickest I have ever been in my life, with sepsis. I was hospitalized for a week, with the stent still in, they were giving me heavy doses of Rocephin to kick the infection. I was able to go back to Cleveland on March 6th to have the stent removed. She explained that the stone itself carried the infection, and when she blasted it that's when the infection was released into my bloodstream. Which makes sense as to why I was so sick and in so much pain immediately following the procedure. 

Scared out of my mind, I went back to Cleveland on April 11th to do the lithotripsy on the right kidney. This one worked out better than the last one, however I came home with a new diagnosis, Randall’s Plaque Syndrome. After getting my stent removed the pain was still just as excruciating. I was referred to switch from pediatric to adult rheumatology in Cleveland where I picked up another diagnosis of Fibromyalgia. But sadly my pain has never subsided, most days I feel like I am no longer living, I am just surviving. 

Mara’s Story

Hypothyroidism, ulcerative colitis, rheumatoid arthritis and chronic migraines.

My health journey started at very young age. I got diagnosed with hypothyroidism when I was just a young child, i dont even remember life before I had it, I must have been 7 or 8 years old when I got the diagnosis. 

As a child I thought it's so annoying that I need to take a pill every morning before breakfast, and every 12 months I needed to go see a doctor to make sure everything is still the same. I hated it. It made me gain weight and made it impossible to lose it, the headaches, fatigue, muscle cramps and other symptoms. But these were manageable with medication and overall life was fine.

But then my health decided that it wants to try something else now, as if life was too boring and easy how it was.

So, when I was 13 years old, turning 14, I got sick. I lost 20kg In 3 months, I couldn't eat anything, constant diarrhea, bloody stool, dizziness, fatigue, muscle weakness, headaches, my mother described my complexion as "wax doll". 

One day I went to the doctor thinking it was just a weird stomach bug, and suddenly I was transferred to a bigger hospital, my hemoglobin was dangerously low, and infection markers high, I had been internally bleeding for months. I stayed at the hospital for the weekend to get blood transfusion and antibiotics to try to lower the infection markers. 

Then came tests, like 20 vials of blood, colonoscopy, endoscopy, I swallowed a capsule camera to get imagining of my whole GI track. And I got diagnosed IBD, ulcerative colitis to be specific. 

Then came medication trials, iron infusions, hospital stays. When my doctors realised that it's so bad that my body is unable to absorb oral medicine, they started biological medicine. I got it every two weeks intravenously, and the first kind was in use for 2 years. 

During those two years I also got diagnosed with rheumatoid arthritis, which added medications, hospital stays for infections and cortisone shots to 16 joints at once, fortunately for me, I love needles.

Well, two years go by and no results, colonoscopy results and blood work results are just worse. So they suggested surgery, but I wasn't ready for that yet, my mental health was very bad, I was already suicidal so the thought of surgery was scary because I knew that I wasn't mentally ready for that, so they switched the medication and we tried for another 2 years. 

Before my 18th birthday I had a colonoscopy, and it was so bad that my doctor thought she's looking at cancer, but fortunately biopsy came back negative. 

After that colonoscopy, I requested to have the surgery, I was tired of going to the bathroom 20+ times a day, constantly in pain and tired.

So, 20/12/2022 I had my first surgery, just 18 days after I turned 18 years old. Laparoscopic colectomy was performed, they removed my entire colon, but left my rectum and anus. I got an illeastomy bag.

Recovery was interesting, not horrible but definitely not fun. I got used to the bag quickly.

The next two years was spent well, no pain, I gained weight back, I got used to taking care of my stoma and I felt like my life was back. During those years I also had time to choose if I wanted a permanent illeastomy bag or do I want to get a j-pouch surgery.

So when 2024 came around and I had to choose? I chose to keep my illeastomy bag, I had gotten attached to it and I felt comfortable with it, I didn't want to risk anything. 

I had my second surgery 10/06/2024 and they removed my rectum and anus, no more bootyhole for me. 

Recovery from that was worse than the first, mostly because I couldn't walk, sit or laugh without my butt hurting or stretching stitched. I also got nerve issues to my spine from the epidural that was used for pain management, it was placed wrong and caused damage. 

The same year I got diagnosed with chronic migraines, after months and months of having almost daily migraines.

Now in 2025? Life is good. I can travel, date, work and study, exercise to some extent if my joint allow it, I still have some meds but it feels like nothing anymore.

I might have lost my teenage years to sickness, but now as a 21 year old, I am excited to spend my 20s as a capable young woman with manageable pain. 

Nikita’s Story

Hashimotos

Growing I never felt like i truly got in with all the other kids. I was diagnosed with Hashimoto’s at 8 years old, and while other kids didn’t have many responsibilities, I had to make sure I took my medication every day, had to see multiple doctors multiple times a year, and had to get blood tests a lot.  Being diagnosed at such a young age, I didn’t truly know why I had to do all this while the other kids didn’t. Growing up with this chronic illness wasn’t easy, I had to manage multiple symptoms, and everyday was a new challenge. This and multiple other reasons took a big toll on my mental health and I eventually got diagnosed with generalized anxiety disorder, clinical depression, and ADHD. I wasn’t able to talk to any of my friends or family about this because they wouldn’t understand how hard it was living with an autoimmune disease. There were some days where I didn’t want to wake up and wondered why my own body was fighting itself. Hashimoto’s is an autoimmune disease and a chronic illness that attacks the thyroid gland. While there is still no cure, the only thing we can do is manage the symptoms. It truly takes a big toll mentally and physically. But just know that while this journey can be challenging and daunting, you’re never truly alone. 

Olivia’s Story

hEDs, dysautonomia, & mast cell activation syndrome

Hi! My name is Olivia, and this is my ongoing story of living with chronic illness.

Growing up, I was a dancer who loved to sing. As I got older, though, I began developing habits that eventually led to my diagnosis of anorexia in 2019. From that point on, life became a constant fight. Although my mental health journey is far from over, I’ve learned how to manage it and regain a sense of stability.

Around 2022, I started experiencing severe neck pain. At first, I dismissed it, assuming it came from years of playing volleyball, dance, and basketball in high school. But by 2023, the pain became unbearable. I found myself in the ER, unable to move my neck, with a pounding headache, yet I was sent home with only pain medication. This became a repeating cycle for the next three years and just got worse every time.

Fast forward to July 17th, 2025, everything changed. I went from boxing, lifting, and running miles a day to barely being able to stand. That night, I began shaking, sweating, and my jaw and neck locked up completely. At a new hospital, I finally received an MRI. The doctors noticed abnormalities but didn’t think they were immediately serious. They prescribed more medication, but it barely touched the pain.

Every day since has been a battle. I experience constant pain, limited movement in my neck, fainting spells, low blood sugar, nausea, vomiting, locked joints, and dislocations. After seeing a spine specialist, a physical therapist, and a specialist in the city, I was finally diagnosed with hypermobile Ehlers-Danlos Syndrome (hEDS), chronic pain, dysautonomia, and mast cell activation syndrome (MCAS). I remember crying when I got the diagnosis…someone finally believed me.

Because I was dismissed for so long, my neck tissue is now damaged and inflamed. The nerves from C1–C4 are being compressed, I have disc degeneration, and only about 10 degrees of neck movement. The vertigo is so severe that standing or walking for long periods is almost impossible. Somewhere along the way, I also developed hypoglycemia and now wear a continuous glucose monitor. We are still in the process of ruling out POTS and other potential complications.

There are days when I feel completely trapped in my own body, unable to move, speak, or even recognize myself. But I hold on to my goals. I’m a pre-med student, an intern, and I work hard every day to build the life I want. I’m surrounded by incredible friends and a family who have supported me through every step of this journey.

This is just a condensed version of my story…one filled with fear, uncertainty, grief, and resilience. I’ve learned that eating is a privilege, walking is a privilege, and living without pain is a privilege.

Be kind to yourself,to your body, to your mind, and to the life you have. You only get one (even if it’s a difficult one sometimes).

Kelseys Story

Rheumatiod Arthritis & Ankylosing Spondylitis

Hi! i’m kelsey. i’m a teenager living with chronic illness, and this is my story.

I live with Rheumatoid Arthritis and Ankylosing spondylitis. Here is what I would love to share. I’m no stranger to severe joint pain, chest pain, and stomach pain. The ER doctors and nurses have become very familiar with me. Diagnosed shortly after my sixteenth birthday with RA. A spell of passing out, with my limbs locking up lead to a hospitalization. Learning my immune system was attacking other parts of my body. This lead to a diagnosis of Ankylosing Spondylitis. I live with chronic pain, mostly affecting my hips and neck. Brain fog, weakness, fatigue. The list goes on. I’m sharing my story so others feel less alone, and awareness to illnesses affecting other, that often goes untreated. I take Methotrexate, essentially a chemo pill to slow down my progression. It takes its toll, but I am learning to live with this and enjoy my life through it all!