Why I Wish More Doctors Would Think 'Outside the Box'


I have been living with chronic illness and a visual impairment since I was a baby. I was born with something called congenital toxoplasmosis, which is a parasite that you can catch from raw meat or cats. It’s a condition that can affect the eyes, brain and liver. In my case it damaged my eyes and brain, causing legal blindness and hydrocephalus. I have struggled a lot over the years because I don’t fit textbook symptoms so sometimes doctors don’t believe me or have very little knowledge. I have had a fair share of doctors who don’t believe me because I don’t exactly fit into one box, so to speak, and it’s hard to find doctors who have the ability to think outside the box and try treatments they might not think of otherwise.

 

Sometimes living outside the box is cool because I am able to prove that everyone is unique and it causes doctors to have to be more creative and open-minded about different treatment options. I also get to prove that I am fully capable and have a very good understanding of my conditions. I have taken it upon myself to really understand all types of medications and how they can be used for more than one thing.

The downside is I have been mistreated by professionals who aren’t willing to listen and take the time to get the whole picture of what’s going on. I have had doctors label me as having a conversion disorder because my scans are always normal regardless of my symptoms. Being legally blind does not help because it is really hard to explain what I can and can’t do. I have had to prove myself a lot to people to get them to understand how independent and capable I am.

Using humor is one of the best ways to deal with these kinds of situations because it makes people more at ease and less worried about how to interact with others. I know this is just how it’s going to be the rest of my life because of the fact that so few people understand how my body responds to things and how I get through day-to-day life.

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Thinkstock photo via TongRo Images Inc.


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