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I have spent my whole life trying to be what I thought was “normal.” I was always an active kid, involved in sports throughout the school year. I had a couple random injuries but there was nothing to tie them together. I have always had joint pain. However, as a young child, the doctors seem to dismiss the pain as “growing pains” and send you on your way. Then when I was 16, I suddenly became wheelchair bound. I am now 20, and after a few years of uncertainty, I got diagnosed with Ehlers-Danlos syndrome at 19.
While I was relieved to have answers to my symptoms, the day I got diagnosed was the first day of knowing I would never be well again. It opened my eyes to symptoms I was having that I always assumed were nothing, and to the fact that in my quest to be normal since the age of 15, I was only making my body sicker. So while I was happy to have answers, accepting that my life was now going to be different proved to be quite the challenge for me. I never wanted to be perceived as a complainer, and most doctors just brushed off my symptoms as they slowly started getting worse. So I continued the say nothing and hope problems would go away on their own or I would just accept a higher level of discomfort. Then, I had one doctor tell me this, “Even though you will get worse if you want to get better you need to accept your diagnosis and learn that it’s okay to need help.”
I took his advice and slowly started allowing myself to voice what I needed. I started being able to forgive myself if I was in too much pain to do something or if I had to cancel plans last minute. I have connected with other people who have EDS and heard their stories and listened to their tips. One of the biggest parts of accepting my diagnosis was when I began researching things I could use or do every day to try and make my life easier. It may seem small, but I will use KT tape to help my joints, I will call my doctor when a new symptom arises or something gets worse, and I will give myself a break and listen to what my body needs in order to still live the best life I can live. Instead of trying to hide my life, I told my friends what was happening. This was a big step for me as I spent so long trying to keep up with them, it was the first time I found it in me to say that things would sometimes have to be different. At first, I perceived this as weak, and I never wanted to be the friend that complicated plans. However, now I use it as a way to show myself that I am working closer and closer to acceptance and that living unapologetically as myself, requires way more strength than pretending to be normal ever did.
Besides the physical aspects that I needed to adjust to, I found it the hardest to live with the anxiety and the guilt. I grew up thinking that if I didn’t show emotion I would be considered strong. Doctors often told me that I was strong because I pretending this diagnosis did not affect me emotionally. Coming from this mindset, when it became evident I was struggling with anxiety, I felt destroyed. I felt like I was letting people down because I had let the illness take over not just my physically worn down body, but my mind as well. I tried to keep the anxiety hidden for a long time, and this is still the part that is hardest for me to accept and the hardest for me to admit. I still rarely tell people about it. However, in my own mind, I have begun learning coping techniques and treating it like it is as real as my physical symptoms because it is. I no longer look at it as a weakness, but as something that I can handle. I can still be the strong person everyone thought I was because EDS and all of its comorbidities make the will to fight within you bigger than any of the symptoms, even if you don’t always realize it.
One of the biggest challenges I have faced on this journey is learning that accepting my illness doesn’t mean it owns me, in fact it means the opposite. Accepting it just means that I am free from denial and can live to make life easier for myself instead of living to be normal, and making all my tasks harder. Most importantly, acceptance has taught me how to be a person with an Ehlers-Danlos syndrome instead of Ehlers-Danlos syndrome defining me.
I still have a long way to go on my journey not only fighting EDS but with accepting that even though my life will have limitations, I can still make it the life I always envisioned myself living. I push myself to do what I feel I can handle every day, and someday’s that requires pushing myself to just stay home and let myself rest and that’s okay. Acceptance for me has been way more than just knowing and approving that I have to do things differently from now on and that I will have challenges to face that I never imagined I would face. Acceptance for me is living as me and embracing that while I will always be sick, I can still be me. I can still work towards my dreams, have fun, and live a full life; but I will have to do it with KT tape by my side.
Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
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