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  • Alex Dean

Being a Young Person with Chronic Illness

This illness was not on my list of to-dos in life. It wasn't on a bucket list. It wasn't something I looked forward to. My life was supposed to be ordinary. Even so, that is not what was in the cards for me.

I struggled for years to find the answers to what was happening to me, why my joints hurt so badly and why I found myself injured and in pain more often than not. When I received my diagnosis of Ehlers Danlos, followed by Chronic Pain and IBS and Orthostatic Intolerance along with various others, I felt vindicated. This trouble was NOT something I was making up or overexaggerating about. I was not being a hypochondriac when I said I thought something was wrong or when I was looking for answers to problems no one but me saw. This is not something I wanted, but I know that it is something that's a part of me.

Once I found the diagnosis however, my battle was not over. On the surface, I look like any other millennial. On the surface, I look like any other young person in the workplace, in the store, on the street. Because of this, I struggle. That's why I'm so thankful for this community. If I were older than I am now, I wouldn't be questioned about my cane. If I were older than I am now, I might not be called lazy for parking as close as possible to the store's entrance. If I were older than I am now, my pain might not have been overlooked for so long. Because "You can't be in that much pain, you're so young" and "If you were really in that much pain you would look a lot worse." Because I'm young, I must be exaggerating if not making it up entirely.

It doesn't matter that my medical bills are more than those of my mother. It doesn't matter that my specialist was able to diagnose me in 15 minutes based on her expertise with Ehlers-Danlos Syndrome in conjunction with my detailed self-written history of symptoms. It doesn't matter that my medical binder is more organized than my office at work because without it I may overlook a new symptom or situation that I need to bring up to my doctor. No, none of this matters because I look fine to other people. None of this matters because I am under the age that others have in their mind when "chronic illness" is meant to become a problem. It doesn't matter that I don't want this chronic illness, because to the world at large, I'm too young to have it anyway.

That is why I'm thankful for this community of individuals who understand that being "young" doesn't mean being "healthy." Invisible Illness is something that occurs regardless of age, but there is something to be said of finding others who know the hurt which comes from being told you're "too young" for the thing you have.

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