‘You can’t have these symptoms because they do not match your appearance. You must imagine them.’: Woman with Ehlers-Danlos syndrome shares journey to diagnosis, reclaiming her life

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“I ran, jumped, and hit the ball with full force; sand radiates when my hand comes in contact with the ball; grains splash into my eyes. My feet land on the ground. I twist my ankle, but I didn’t twitch. I couldn’t see where the ball lands on the other side of the net. I rubbed my eyes, heard the referee blowing the whistle; at the same time, my beach volleyball partner let out a high-pitched scream. People ran towards me, hugged me, lifted me off the ground. Someone shook a bottle of sparkling wine and sprayed it all over my back. I ducked so that my fire red hair, styled to little spikes that poke out in every direction, wouldn’t get wet and collapse. Slowly, my vision became clearer, and I realized we had won!

I scored the last point in the finals. We won first place at one of many beach volleyball tournaments that year. We went to celebrate at a bar. I picked a short black dress with a deep cut-out on my back, almost extending to my buttocks, to show off my tattoos and my sun-tanned skin. I picked black high heels that really weren’t made for much walking, but they acted as an extension to my long legs. I was pumped with adrenalin and full of self-confidence, ready to be the center of attention on the dance floor. I danced, drank, kissed my six-packed boyfriend, and did whatever I felt like doing, just because I could, until the sun came up.

woman playing volleyball in her competition
Courtesy of European Beach Volleyball Foundation

And poof, my little dream bubble disappears, just like that. I wake up crying. I have had this dream a lot lately. It is one of the last memories of my healthy life, or rather a compilation of my best moments right before everything changed. In the blink of an eye. I know people use this phrase all the time to emphasize how fast a moment can pass, but it was literally a blink of an eye in my story, that I went from the healthy, naive, indestructible woman from my dream to a severely ill young lady from one second to the next.

Remember when the Flash accidentally created an alternate timeline where the world was still somehow related to what he was used to, but all the essential details felt different and wrong? That is the kind of limbo in which I was stuck for several years after I developed strange symptoms all over my body. I was still me. Everything around me was still how it had been before, but all that mattered to me changed when I had my blink-of-an-eye moment.

I was eating pasta I prepared with one of those Maggi Fix pulverized gravies, because back then, this was my idea of ‘cooking.’ I sat on my couch, took a bite, and suddenly, the world around me began spinning. Half my body went numb, my vision blurry, and I felt like I was having a stroke. The weeks after, I went from doctor to doctor, but all I heard was that a young woman like me was probably pretty stressed at work, right? They told me I couldn’t have these symptoms because they did not match my appearance (as in a healthy-looking 24-year-old woman). I must imagine all my symptoms, even the one where I was suffocating at night, because every time I fell asleep, I stopped breathing. I found myself in a world that was similar enough, but the crucial details couldn’t have been more wrong. Yeah, Flash, I feel you!

woman with a green dress on
Courtesy of Karina Sturm

While I was in endless survival mode, mostly in bed for months, and none of my doctors believed me, every well-crafted piece that compiled my life broke apart. It started with my job I couldn’t execute anymore. I was a lab tech in a research lab, and even though I tried a couple of times, I could barely stand or sit upright or focus on any work. After a few failed attempts, I gave up and stayed home on sick leave. But being home was torture, too. My soon-to-be ex-boyfriend (spoiler alert) was at work all day, and I did not feel safe alone in my state of health or rather the lack thereof.

I was barely conscious some days and was worried I would collapse, and nobody would notice. Even though I had no medical help, I was hoping if I lay on the ground, unconscious and not breathing, one medical professional might believe that my symptoms were not in my head. Wishful thinking? As a consequence, the second piece that fell apart was my independence. After only one year in my new apartment, the first time I moved out and the beginning of my career, we gave up our beautiful place and moved back to my parents. Due to the severity of my symptoms, I was unable to drive a car or even be alone on public transportation, so I relied on my family and friends, which I hated. I was the strong one. I didn’t need people taking care of me. I was the one that took care of others! I would constantly feel like a failure, like a weakling, like someone that hasn’t done enough to get better.

And then the last piece broke apart: love. My boyfriend left. Okay, to be fair, I threw him out after asking him if he still loved me, and he said, ‘I don’t know.’ I knew the answer before I asked anyway. I don’t blame him, though. We both were super young, and I went from an athletic woman to a frustrated, angry couch potato – not by choice on the potato part, but letting out my anger on the people around me was my decision and not one I am proud of. If I could not handle my new life, how could he? Back then, I was so self-absorbed in my suffering that I did not even care that he was gone.

woman getting tests done
Courtesy of Karina Sturm

In a way, I felt relieved because I could stop feeling like a burden and start focusing on myself rather than trying to keep my ex’s mood up. I felt so neglected by doctors and the medical system that I became angrier and angrier. Anger led to frustration; frustration to depression. On top of it, my boyfriend wasn’t the only love I lost; lots of friends joined the club. With me not being this active, always-ready-for-some-fun Karina, I was told that ‘we developed in two different directions.’ Losing all these people made me believe I was unworthy of being loved, so I didn‘t even try to keep them in my life. I let them walk away.

In a way, losing most of the things you always thought made up who you are can be freeing too. Because see it this way: you get a clean slate. You can start from the beginning and do whatever the f*ck you want. You can craft your life the way you always wanted it to be. Did I see it that way back then? Hell, no! I was devastated and thought life was over. Well, surprise, it was not! But I had a lot to learn. And if you stuck around with me until this point, I promise, life gets better from here on.

The day I was finally diagnosed with a rare condition called Ehlers-Danlos syndrome and additional complications was the day I started living again. Because for years on end, all I could do or think of was to find answers, to figure out what was wrong with my body. A non-exclusive list: craniocervical instability (which caused most of my symptoms at the beginning of my chronic illness journey), dysautonomia, mast cell activation syndrome, small fiber neuropathy, Dunbar syndrome.

woman riding around in a scooter
Courtesy of Karina Sturm

Some disability activists don’t like the wording ‘fighting your illness,’ and I can see why. We need to accept our chronic condition and start to live with our illness rather than fight our own bodies. However, it seems impossible to accept something if you don’t even know what it is. I needed a name; I needed to know that I was right, and this was not in my head. And a diagnosis is crucial for all parts of the chronic illness life, because without, there is no adequate treatment, no social support, or, God forbid, even acceptance. A diagnosis is a key component, at least for stubborn Germans like me, to move forward.

So, the day I knew I had EDS was the day I took the first step on a long way to rebuilding my life. A new life, with a chronic illness. On that day, I felt a little less lost and alone. And finally, I could start grieving everything I had lost over the years. I could stop fighting everyone, including myself, and look for options to improve my quality of life. It took another couple of years until I figured out the best possible treatment plan for all my conditions and got to the point of acceptance. But believe me, getting there was not a straight line.

I had many days where I would go out in the backyard with my old and dusty beach volleyball ball and try hitting it a couple of times to see if I might have gotten stronger and healthier all of a sudden… Spoiler alert: no, I did not. Slowly but steadily, I realized that no matter how hard I tried, there was no way back into my old life. I needed to find a new purpose, a new definition of who I was and what I wanted in life. And that’s when something shifted inside me.

woman laying in bed hurt
Courtesy of Karina Sturm

Who said life with a chronic illness could not be fun and exciting? Who said I could not switch to a different profession that accommodates my needs better? Of course, as chronically ill and disabled people, we do face a lot of hurdles imposed on us by society. We face daily discrimination and many physical barriers, but what was holding me back the most was my own mindset. I had so much internalized ableism that would tell me that I, as a chronically ill and disabled person, was not good enough, not worthy of anything, that I was afraid to even try …until I did!

All I was good at, or what I thought to be my talents, were sports, medicine, and science. But wait, haven’t I acquired another talent over those long years of fighting for my life, fighting for a diagnosis, fighting for someone to believe me? Yes! I became an advocate. I learned how to step up and use my voice in order to be heard. So I added one and one and started a blog to support other people in my situation and cope with all the trauma I had to bear. Writing became my most crucial mechanism to deal with my new chronically ill self. Whenever I had a happy moment with manageable symptoms, I would write about it in my diary. Another frustrating appointment with medical professionals? Why not use it as an inspiration for a blog post.

woman in the lab mixing things
Courtesy of Karina Sturm

Over time, I wrote articles about my medical conditions as well and went on to take part in a journalism online course to see if I might be able to turn my passion and knowledge into a profession. The course helped but wasn’t really what I wanted to achieve. Think back to the overly motivated young woman on the beach volleyball court… Of course, I was thriving for more. As a consequence, I applied to journalism MA programs all over the world. Benefitting from the fact that I am bilingual and mostly fluent in English and German, even though some might say my English is better than my German (I am Bavarian; we don’t always sound very German), I contacted all journalism programs with an option for distance and online learning.

I was stopped in my tracks immediately. Most were not equipped to offer the kinds of accommodations I needed with my chronic illnesses and disabilities. When I say most, what I really mean is there was precisely one MA degree in the whole German and English-speaking world accessible to me. Seriously? I only had this one chance to get closer to my new dream? I felt like the world would end (again) if they did not take me in. After all my hard work to reinvent myself, I couldn’t be stopped right now. Luckily, I wasn’t, and honestly, the university did not have much of a choice. No, not because I am a decent writer, but more because I asked every single person in my life that I ever worked with to write a letter of support.

On top of it, I contacted popular actors to send a letter too, and to my surprise, one actually did! (Thanks, Tom Beck!) My application was approved, but only on the condition that I scored high on an English language proficiency test. The next hurdle. My English was acceptable back then, but those tests had a strict and standardized procedure to follow, which I needed to practice. I took the little money I had, disability benefits, and paid an English tutor because failing was no option! I spent half a year studying dozens of English books and then scored 119/120 points. (I am still upset about the one missing point, which must have been because of the speaking part in the test.)

When they asked me what I enjoyed most about living in San Francisco, where I moved to in 2017, I mentioned the male genital. Why? I have no clue. When I am nervous, I babble without thinking. What I believe happened is that I wanted to highlight the diversity of the city, which I clumsily did by talking about the two older men that walk around the Castro neighborhood, my favorite part of the city, naked with just a sock over their penis. (And yes, I did explicitly name that genital more than once.)

woman taking picture of a mural
Courtesy of Karina Sturm

I aced my English test, started studying in Edinburgh, Scotland, and for the first time since I became ill, I was seen for my work first and my illness second. Usually, whenever I meet new and healthy people, I am reduced to my illness, and once people know I am sick, they pity me and assume EDS is all I am. It has been so long since I was treated like the multifaceted person I am, which felt so validating that I almost cried.

Before I started studying, there was an us and them. The chronically ill, disabled folks (or even a smaller minority of that: chronically ill, invisibly disabled folks) and the healthy world. Even though I tried hard to bridge that gap with my work, it seemed impossible to make other people truly understand how I feel without them experiencing EDS themselves. Additionally, there is still a large percentage of non-disabled people that simply don’t want to be educated on illness and disability, because it is not the most cheerful subject. However, my peers and teachers were nothing like that. They pushed my boundaries just like they would with any other student. After a decade, finally, someone saw me for who I truly was.

This was the moment I realized that I didn‘t lose everything. Sure, I lost parts of my health, but I am still alive; I lost the ability to play volleyball or really most sports, but I can still take part in many other activities. I lost some people I loved, but gained even more within my community; I lost a career but found the love of my life, writing, instead. I lost parts of my independence, but weirdly, gained a lot of autonomy in other areas too. And what’s been there through it all was the essence of what makes me me. That version of me at the volleyball court always existed; I just couldn’t see her because I was so focused on grieving my past pre-sickness life.

The young woman on the beach volleyball court is not competing in volleyball competitions anymore, but she still loves to win (for example, film awards, which I just did for a documentary on people with Ehlers-Danlos syndrome). And honestly, that‘s so much more important than a sports competition to me. I mean the awareness the film raised, not the award itself. She is still permanently thriving for more, pushing her boundaries to reach her dreams. However, now, when I say ‘thriving for more,’ it has a lot more depth. These days, thriving for more means managing another year without surgery while finishing a journalism degree while filming a documentary along with chronic pain and unstable joints; thriving means being able to accomplish things with a chronic illness.

woman with her dogs
Courtesy of Karina Sturm

Oh yeah, and one part about me that never changed is my weird relationship with my hair. It is not fire red and spiky anymore, but during the pandemic, I decided to shave them off. For two years, I experimented with different lengths. I made it down to 1 mm and have never felt freer! So I think you get my bottom line. For every piece, I have lost, I gained several more. And some of the things I thought I had lost were never gone.

I am not saying my life is easy or that I always smile and am optimistic. In fact, I am mostly a pessimist, like many chronically ill people who faced this much adversity. But I am saying that every part of my being has so much more meaning and purpose now than ever before. I have never felt this complete and fulfilled despite all the challenges I continue to face. After all these years, I am happy where I am. I don‘t know if this is where I always want to be, but for now, I am satisfied …until it’s time for my next adventure. And I can’t wait to see where life takes me.”

woman posing with her head shaved
Courtesy of Karina Sturm
woman looking right into the camera
Courtesy of Karina Sturm
woman with a shaved head smiling for the camera
Courtesy of Karina Sturm

This story was submitted to Love What Matters  Karina Sturm from Germany. You can follow her journey on Facebook, Instagram, and Twitter. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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