My EDS Story: Making the Most of Your Zebra Life

I spent most of my childhood having earaches, headaches, stomach aches, TMJ and eventually migraines. From a small child I was always tired, putting myself to bed when I needed or as I got older falling asleep on my homework. Like many EDSers, I had painful joints that were explained away as “growing pains” even though I had stopped growing by then. My mom and I didn’t challenge doctors at the time because we felt that if anyone would know it would be the specialists. The other clue that things weren’t right, was that I was forever spraining my ankle (particularly my right one). When I was 13 I was on crutches for months because the pain was so severe when I tried to walk on it. With the help of a PT I eventually got past it, but 2 years later when it happened again, though more severely, I was diagnosed with chronic regional pain syndrome (CRPS). This is not to say that everyone who has EDS is at risk for CRPS, but due to the frequency with which we can cause damage to our bodies it is not as remote a possibility as it is for many other people. When I was 17, I was diagnosed with gastroparesis and then at 19, after my freshman year at college, I was diagnosed with postural orthostatic tachycardia syndrome (POTS). On the surface it seemed like I had problems in almost every system in my body that had no connection whatsoever. How does such a thing happen?

The truth is that it doesn’t. Years later when I was in my early 20s I was seeing a renowned pain specialist for CRPS.Since I had so much going on health-wise I wanted someone who could take in the big picture and connect all of the dots. When I went for my first appointment I found myself doing all of these weird things. He’d ask me if I could touch my thumbs to my forearms, can I touch the ground with my palms etc. and I’d hear him make these hissing or grunting noises after each one. As if somehow they caused him physical pain. What was this? Afterwards, he explained that he believed it highly likely that I had EDS hypermobility type and what exactly that meant for me. It tied much of my diagnoses in a big red bow and became my ‘why’. He told me why I am “clumsy” and hold onto things with a death-like grip is because those with EDS often have difficulty with proprioception. The best thing is that now that I know what I have, I have been able to take precautions. I have figured out where my weak joints are, how best to safely strengthen those muscles to help support the joint and keep it in place, but also what braces I need for them and for joints that can’t really be helped any other way (like finger joints). I was so thankful that I had finally found a doctor that listened, was knowledgeable, and validated feelings I had had since childhood.

Many of my experiences, medically, were of doctors that didn’t believe me or didn’t look beyond the very obvious explanation. They were much happier when they could give me an antibiotic or some other quick fix. The more and more complicated I became I found the more and more I had to fight to get the care that I deserved. It was exhausting, and heartbreaking. As a child it meant that sometimes my mom didn’t know whether to believe me, and as I got older I didn’t know whether I should believe myself. That is the worst feeling in the world. That doubt when you know that something is not right with your body but at the same time, if doctors can’t figure it out maybe there isn’t anything wrong at all? I think that is the greatest disservice doctors do the patients than anything else.

I struggled for a long time. I was bedridden off and on (and still am), and I felt like my dreams and much of my life had been ripped away. Slowly and surely, I have built it back up again. I have new dreams and goals. My life is not what I thought it would be, but in many ways it is better. I have made it mine. I still have struggles and bad days (or weeks, or months) but the more answers that I get the more everything clicks and the better off I am. I was really able to push through life just fine until I got the POTS diagnosis. That left me bedridden for some time and it took almost a year for someone to actually help me. I had to take a leave of absence from school, which honestly broke my heart. Over my many bedridden periods I started to feel as though, suddenly, I had all of these boundaries. I couldn’t shower on my own. I couldn’t go to the bathroom on my own. I couldn’t, I couldn’t, I couldn’t. The rules were for my own safety, but I suddenly went from being a young woman with blossoming independence who was at college and working towards her veterinarian dreams to essentially a young woman who felt like a child, and a particularly sick and depressed one at that. Over time, I learned what I needed. If I couldn’t push my boundaries physically, then I needed to push them mentally. Without that, the walls would close in and I couldn’t breathe, and then it was a downward spiral of isolation and Netflix, and possibly computer games. I started taking online classes at state universities, and I picked up knitting as a regular and serious hobby. When things feel bleak now I have options. I try to learn a new technique or skill in my knitting, take a class in something I am interested in as there are many free or inexpensive ones out there, learn a new language or skill, work on one of my hobbies like colored pencil drawing, hand lettering, or even picking up something new. Volunteering for DSN also helps to keep me engaged and has the added bonus of making me feel like I have a purpose in life no matter what is going on health-wise.

Many of us went from being and doing all kinds of things and once we got sick we only felt like this sad, depressing sick person. Period. It took me years to remember that I was so much more and pushing those boundaries were important. When I can push physically, I do, because I want to build endurance. I want to get stronger so I can take more of my life back, inch by bloody inch. When I can't push physically it is important to continue to grow in another way which is why I love learning new things.

I am not cured by any means and there is much work to be done as far as quality of life goes, but I have come so far. The rollercoaster ride that is chronic illness life is exhausting and frustrating at times, but I have also learned to listen to my body and treat it with the respect and care that it deserves. I also was able to spend more time doing things that I enjoy and cultivating skills I never would have had time for if I had continued on my ‘planned’ journey. The truth is that I am thankful for that. There will always be bumps in the road, and while I may be down for a while, I know how to handle them and get myself back on track. Or if I don’t know, I have an amazing family of zebras (and non-zebras) who will lift me up and help me keep chugging along.