I have officially been diagnosed with a sleep disorder for six months now, but I’ve had it all my life and have been visibly affected by it for the past three or four years. Now this came as a surprise to me because, though I could tell my body was acting differently, I had just chalked it up to stress and major life changes. I had to work hard to graduate high school early, I started at a university I didn’t fully like and I had a roommate experience for the books. So much was going on in my life that a few differences in my sleep schedule was not really at the forefront of my attention.
It was during the end of my freshman year and last summer when things got bad enough for me to worry. I lost the ability to be myself and to do all the things that I took for granted. I was lost and confused, so getting the diagnosis was amazing and devastating at the same time. I finally knew what was ruining my life and it was something that was incurable and chronic. I got treatment and though it is not perfect and we are still working out the kinks, I have been slowly regaining my life back piece by piece.
I have narcolepsy. It is hard and it is not anything that I ever thought I would have to or could deal with, especially not at this age. I am only nineteen and I have to deal with a lifelong disability and figure out how to live my life in the best way possible. It has been insanely hard but I have not let this change me and how I live my life.
Disabilities do not define a person. We are not our disabilities. Sometimes those of us with disabilities need assistance, but we can do so much more than what people give us credit for. There is so much stigma surrounding the idea of someone having a disability and at the end of the day it is so wrong. Everyone deals with their own issues, whether they are small or large. The things that you deal with are not what define you. It is what you make of your struggles and the hard times that defines you and your character.
It took a lot of time and a lot of people making light of my situation or treating me as though I could not walk through a door without someone holding my hand to realize that I am strong. People may not understand what I go through — and I don’t blame them for their reactions — but at the end of the day if I do not need you to tell me what you think of my situation. No one could ever know how hard it is to have any form of a disability unless you have one. Support is great and something that many people need but a judgement is not.
While you may not understand what your friend or family member is going through, the best thing you can do is to listen. Listen without judgement or any preconceived notions that you may have. Let them know you are there and that you will give them help if they need it, and that you will wait until they’re ready to receive it. All anyone ever wants is to feel as though they are being heard and that they aren’t alone in their struggles and achievements. Let them know that you recognize how strong they are and how far they have come or how far you see them going.
I guess I just want people to realize that if you have a disability, there are people out there that can relate to what you are going through. We can relate to different aspects of each other’s situations. You are never alone in your battles — or your victories. You will always have someone there watching and admiring everything you do and achieve in your life. A disability does not define anyone. It is heart, determination, courage and love that defines you.
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