CN: chronic pain, ableism, images of mild body contortions
I sat down at the bus stop. There were still a few minutes before my bus was due to arrive so I grabbed the book my physical therapist had given me that morning out of my bag. I opened the book with a blue cover and a large orange flower on the front, skipped past the acknowledgements and Intro and stumbled on to “Suggested Evaluations for the Primary Caregiver.” The page was filled with medical jargon, but a number of words jumped out at me.
Fainting or light-headedness
I blinked. I thought I would be reading about joint instability but this book wasn’t just about my pain problems. The book contained a list of every serious health problem I had ever had in my life, and potentially, a reason why they were connected.
Unprepared for a life-changing, identity-shaking realization, I closed the book and placed it back in my bag.
The first time I heard the term Ehlers-Danlos Syndrome was from my co-worker. Her sister had been struggling with pain and injuries for a long time, and after years of searching for answers, she was finally diagnosed with EDS. My co-worker approached me at work with a slip of paper in her hand. It said, “Ehlers Danlos Syndrome Hypermobility Type iii.” She told me to look it up.
I googled the unusual name later that night and skimmed the wikipedia page. It said that EDS was a condition that, among other things, leads to overly flexible joints and chronic pain. The page was relatively short and focused heavily on symptoms such as dislocations, arthritus, cardiovascular issues, and stretchy skin. There were some bits that sounded like me, but mostly the descriptions didn’t resonate. I closed the page and forgot about it.
In October of 2014 I had discovered that I injured the left side of my sacrum. I was expected to recover in just a few months, but I went to phyical therapy once every 2-4 weeks (depending on what my insurance would approve) and over and over, my physical therapist would discover that I had once again slipped out of alignment and into the injury pattern. I practiced strengthening exercises at home, but they made little difference and sometimes made me worse. I could often tell when shifted out of alignment again, but it was difficult to pin down what caused it. It could be something as minor as bending over and straightening up again. I had pain and tension in so many places, I often wondered what having all my muscles, bones and joints in the right place at the same time would feel like, and if I would even recognize it if I got there.
In January of 2015, I started experiencing hand and wrist pain. It got so bad that I had to stop practicing guitar, because just a few minutes of playing would cause my hands to seize up. I went to my physical therapist with this new problem. She said fluid was building up in my wrists and forearms. In the fall I had switched departments in my grocery store job from stocking to cashiering, and we hypothesized that the repetitive motion had triggered the problem. My PT recommended buying some wrist braces to guard against excess fluid in my hands. But my co-workers were doing the same job and they didn’t need wrist braces or a physical therapist. Why did I?
My PT carefully taped up my wrists and encouraged the fluid to flow out of my arms and back towards my heart. I turned over this new pain problem in my head and asked my PT why she thought I was having another serious issue. She said, “Oh it’s probably more of this loosey goosey thing you’ve got going on. You’re just kinda wobbly.”
Her word choice struck me and the wikipedia page about overly flexible joints popped back into my head, but I couldn’t remember the strange name of the syndrome. I described it as best as I could and said, “Do you know what syndrome I’m talking about? Have you heard of this?” Her hands slowed and her face closed a bit. She said, “Yes, that’s Ehlers-Danlos Syndrome.”
I asked if she thought it was possible I had that. She explained that EDS is one condition on a spectrum of hypermobility problems. Some people have hypermobility in just a few places in their body. Other people have a more widespread hypermobility disorder, with EDS landing on the more severe end of hypermobility, followed by Marfan Syndrome at the most severe part of the spectrum, a syndrome which often results in tall skinny bodies and serious heart problems.
She said she would place me just before EDS on the hypermobility spectrum. My curiousity was piqued but I took her word for it that I didn’t have it. I tried out the phrase “Hypermobility Disorder” in my head a few times and liked having words to describe what was happening.
At the end of the appointment, my PT left the room and returned holding the blue book. It was called, “Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome.” She said that the book had really helped a lot of her patients make sense of what they were going through. She recommended I read it and see if I recognized anything of myself there.
There’s a lot of stigma attached to having a syndrome. Having an illness or a condition that will stay with you for your whole life is a heavy idea to process, especially in a society that moralizes health. I had to spend some time mulling over the idea that I might be one of those people, someone who was not normal on a biological level. What would it say about me as a person if it turned out I had a syndrome? Would it reveal an underlying flaw in me as a person, in addition to my body?
Or would it relieve me of the guilt I felt every time my body couldn’t keep up with someone else’s? I had spent the last 2-4 years frustrated with my body’s tendency towards tension and fatigue. I always thought that if I could just process my emotions rather than turning the stress into tension, if I could just get into shape, if I could just eat healthier, my body would have the energy and strength that my friends’ bodies had. But EDS introduced a new possibility. What if I had been wrong and it wasn’t as simple as trying harder? What if there was a reason my body acted differently?
Once I had spent some time pondering these questions, I got up the courage to open the blue book again. The reading was incredibly dense and dry. Many of the medical descriptions were so technical and so buried in statistics and citations, that I had to read between the lines to understand how this medical condition applied to everyday life.
And yet, my eyes opened wider and wider as I read the growing list of health problems and symptoms that matched my own: Fingers and elbows that bend backwards effortlessly, shoulders that dislocate and relocate easily, repetitive motion strain, swollen wrists, SI joint instability, irregular patterns worn in shoes, chronic fatigue, acid reflux, feeling full after eating only a little food, painful menstrual cycles, weak bladder control. Even celiac’s disease, which was my central health problem up to this point, was listed as being common in EDS patients.
Then there were the symptoms listed that I recognized but had never before put words to, problems that I didn’t know other people didn’t also experience: If I use a desktop computer with a mouse for too long or if I lie down and hold my phone above my head, my pinky goes numb in just a few minutes. As a teenager, I hated dentist appointments because my mouth was so sensitive and cut so easily, everything hurt. When I got fillings for my cavities, my dentist accidentally drilled on a tooth that wasn’t numb. They thought they had just missed a spot in the numbing process, but the book explained that EDS patients burn off lidocaine extra quickly.
Perhaps the most unexpected set of symptoms was when the book described the condition POTS, which had to do with sudden dramatic drops in blood pressure. It included symptoms like lightheadedness after standing up, and heart pounding after lying down or otherwise changing position. I can remember being 15 years old and hearing my heart pound in my ears when went to bed. It wouldn’t stop no matter how many deep breaths I took or how much I relaxed. My jaw hit the floor when i read the treatment for POTS: increased salt and water intake. I’ve been teased for years about the way I put three times as much salt on my food as anyone else, and I even want to add extra salt to already salty foods like pizza. But my blood pressure has always been normal. In addition, for the last several years, I drank water like coffee to keep myself going whenever I was tired and always found that I felt more energized if I drank 60-80 oz of water a day.
There were so many things I recognized, I wanted to keep track of them all. I bought some mini sticky notes and carefully placed one by each paragraph that described something in my own life. By the time I finished the book, I had 33 sticky notes.
It seems funny to say but before reading this book, I hadn’t really realized that I was “double jointed.” Once, my boyfriend saw me playing with my hand and cried out, “what are you doing!?” My thumb was bent back at a funny angle that he said wasn’t normal, but I felt no discomfort at all. I bent my elbows backwards and sure enough, they could bend farther than my boyfriend’s could.
I started investigating my body. I was so used to everything that it did being normal to me, it was strange to think that it was doing all sorts of unusual things that other bodies didn’t do. I’d regularly go up to my boyfriend and say, “Does your body do this?”
I discovered that the book had an easy flat-footedness test that you could do at home: Get the bottom of your foot wet, step on a piece of paper, and outline the print made by the water. Most people will have two outlines, the heel and the ball of your foot perhaps joined by by one thin line of the side of your foot. I grabbed my boyfriend so I could have a comparison. His came out just like the picture of the average foot. But mine was all one connected blob. I was flat-footed.
I was messing around with my feet when I noticed that when I put weight on my foot, it looked funny, as if my ankle was being absorbed into my foot. I slowly lowered my foot, starting with the toe, and watched as my arch sunk down to the floor and ankle sank down with it, which I now know is called pronation. Some more experimentation revealed that as my ankles pronated inwards, my legs rotated outwards, which put further stress on my hips and sacrum. As I flipped through the book to re-read the section on feet and ankles, I stumbled on a picture: a pair of flat feet with pronated ankles, and bendy legs that were rotated outwards. The picture looked just like me!
I told many people my discovery that there was this condition that explained all of my life long health problems and oddities. Many of them received the news gravely. When I told my PT she said, “Oh Kella, I’m so sorry.” EDS, after all, has no cure, and with no cure, there was no guarantee that I would “get better.”
But I was always excited when I told them. Certainly, I mourned the idea of never reaching my full physical potential. But in the beginning, I was focused on feeling elated by the validation of actually having an explanation.
Finally, I had words to describe what I was feeling. I had a name that other people could recognize and say hey, I have that too! When I said, “I have EDS,” I felt like I had something rather than I lacked the ability to do certain things. And most importantly, if all my health problems were caused by an underlying genetic condition, that meant I was off the hook. I wasn’t unhealthy because I had failed to take care of myself properly. It was pure luck. I was unhealthy just because.