A Fine Line: Prejudice in Chronic Illness

For many people living with chronic illness, medications and medical treatments only account for half the battle we fight, if that. The rest of the struggles we face are from people's misconceptions and misunderstandings, sometimes even from the people who are supposed to care for us.

Fatigue and tiredness play a bigger part in chronic illness than the lay public may first think, and affect us a lot more than anybody could anticipate. In my case, I live a full life, no different from the life I would be living without Ehlers-Danlos, AVM or any of my other conditions. I went to school, had lots of friends and passed my first year of medical school with a merit. Most of the time, my friends are great about my conditions and don't treat me any differently for that. 

The problem I have, however, is with doctors who don't know and don't seem to want to know about anything less common than your common cold. Unbeknown to them, I am fully aware that they judge me for what I say and how I feel, and apparently it's not okay to be anything other than the average patient. It seems grossly unreasonable to think that I am being judged for feeling the way I do, physically, due to my conditions. I'm not sure how many of these said doctors have ever thought about it that way.

I know that sometimes, there are people who perhaps don't make the best of their time and spend it making a fuss or dwelling on the unhappy things. However, it's frustrating and is a shame that doctors take that image in, and apply it to nearly every patient that walks through their clinic door.

These doctors have no idea what damage they can do to people, and are blind to the effects they have on people's confidence (or lack thereof) and wellbeing. They make it difficult for patients to trust doctors as a whole, especially new doctors, and make patients feel judged or paranoid when that's not the way it should be. I'm not denying the existence of mental illness and the likes of hypochondria, but I just wish doctors would consider things more carefully before saying the first thing that comes to their minds.

I was diagnosed with Ehlers-Danlos Syndrome by the most well-known EDS doctor in the country, and have a letter detailing the tests and results that led to the diagnosis. Yet, a lot of my doctors treat it as a provisional diagnosis of a disease that barely exists, by addressing it as the "possibility that [you] may have some sort of collagen disorder". Things like this still happen to me, although slowly, I'm disengaging from those who refuse to believe in me and in EDS. I don't need that kind of attitude, and neither do my other doctors who fully believe in EDS and actually want to help.