Forever Different: What It’s Like To Be Diagnosed With An Untreatable Disorder

Ever since I started school, I never fit in. I couldn’t relate to other kids. I didn’t enjoy school and didn’t engage with others the way they did. I couldn’t focus in class. Sometimes I wouldn’t do any work at all and could never explain it. When I did work, my writing was messy. The older I got, the further off I became from what I perceived as “normal.” I always wondered about what separated me from the others and why no one seemed to understand the way I felt. I wondered why I was alone.

My family began seeking help for me. I saw a doctor and was misdiagnosed with ADD. Because of this diagnosis and the limited options at the time, I was medicated with a drug called Ritalin. It made me feel horrible from the moment it touched my lips. I became a zombie and shell of myself. I cried everyday because I didn’t want to take it.

I was not ADD.

It took a long time and lots of fighting back against the system but eventually, further testing began. I began having hearing tests but didn’t know why. It was just an activity and I didn’t see a correlation between it and my schooling. That was until I got answers.

I was diagnosed with an auditory processing deficiency and a fine motor delay. I had hearing loss in one ear and was attempting to function with a disorder that made school incredibly difficult. If you’ve never heard of auditory processing disorders, it’s a hearing issue which impacts around 5% of school-aged children. It is often mistaken for ADD because of some of the symptoms. Having this disorder means I can’t process things I hear like others because, to put it simply, my ears and my brain aren’t fully coordinated. I hear normally and actually understand everything if I’m in a quiet environment, only having to focus on one thing at a time. But I am unable to recognize slight sound differences in similar words and cannot focus on what’s being said in loud environments.

It resulted in being easily distracted and bothered by loud or unexpected noises. I also had a lot of trouble following directions simply because I couldn’t understand them. If I was told to go brush my teeth, I might go brush my hair instead, only picking up parts of the instructions and getting words confused. It also impacts my short-term memory. The fine motor delay explained why I wasn’t the best at writing clearly and why I was a little clumsy.

Unfortunately, diagnosis was only a small part of the battle. There are no treatments for my issues. They are lifelong problems and there are only coping mechanisms. I was fitted for special ear plugs that I would wear at school during work periods so I wouldn’t be distracted. For my fine motor delay, I was given specially shaped writing utensils and went to special classes for printing and cursive. I needed extra support that I didn’t always get. We had to try our best to make my teachers understand my disorder when I was the only student they’d ever known who had it.

Having such a rare issue, living in a small town with limited supports, I struggled to be what I wanted. I couldn’t join in the way I wanted. My seat was always separate. I was pretty quickly written off as unable to keep up and be equal with others. I tried to always keep my differences a secret. I didn’t want to be any less likeable.

I didn’t want the divide to be so obvious.

But there is a divide. My story isn’t unique. People everywhere struggle with so many disorders and disabilities everyday. Many disorders are not “treatable” and impossible to cure. Those of us who face issues that are out of the ordinary, strive to find ways to make our disorders virtually unidentifiable in our daily lives but we know they’re there. Growing up, I had to work harder than everyone else for the same results. But even if I could, I wouldn’t change anything. No one wants to have any sort of health issue, but working hard early made it easier for me later on. I distanced myself from the kids I grew up with and focused on controlling my symptoms. In high school, no one would ever know that I was different. I was a straight-A student with all the possibilities in the world.

For the kids who find themselves constantly trying to explain disorders to friends, being belittled, and have educators constantly lower the bar for you without knowing your potential, hang in there. Don’t ever let anyone tell you that what you’re dealing with makes you weak, because it’s quite the opposite. There is no disorder, disability, or illness that makes anything impossible. Your disorder does not control your future and

it does not define you.

So what did growing up different teach me? It taught me to work hard and never give up. It taught me to overcome the labels put on me. Everyone has something they need to face if they want to achieve anything. My disorders were just one of my many challenges and I overcame them all. Having these issues was never going to be easy but it was possible. I could still be whoever I wanted. Growing up “different” meant that I could decide what being different meant to me. I could decide that it wasn’t going to be a negative thing. I could decide to be the best version of myself. Being different is not a bad thing, no matter what the circumstances are. Never let anyone use your struggles to hurt you because you are bigger than anything you will ever face.

Featured image via Brandon Woelfel.

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