Before my disability became so bad that I needed to use crutches or a wheelchair, people never understood. Even now people still don’t understand. On a daily basis people see me use a wheelchair and then stand up and walk. They say, “Oh, so it’s not permanent?” Yes, it is permanent. My disability is not going away, and it is actually getting worse. What you mean to say is I am not paralyzed. I don’t understand why, but it is a common misconception that everyone who uses a wheelchair is bound to that chair 24/7.
— Not everyone who uses a wheelchair is paralyzed.—
— Not everyone who has a disability uses a wheelchair.—
When I was in my teens and just beginning my journey in this disabled life, so many times I would be called a “Faker” by the able-bodied and disabled community alike. I felt like I was in limbo. I didn’t belong anywhere, and nobody could tell me what was going on. Was I crazy? I didn’t think so, but when you are told something so often by so many people you begin to think it is true.
It made it very difficult to trust people. I didn’t know whether to tell them or not. Do I disclose or hide it? If I hide it and then have a bad day it all comes out in the open really fast. Then I am left with the question of whether or not they will stay. Will they believe me? Will they call me a freak and never want to talk to me again? What should I do? These questions I dealt with on a daily basis for so long. I only let a very small number of people into my life. I put up walls so tall and so strong it took many years of hammering by my husband and my closest friends to break it down. I didn’t even let my family in my circle at first. I didn’t tell them about all of my struggles, my symptoms, or my flairs for fear of rejection. I feared they wouldn’t believe me. I was a teenager, and everyone told me I was young and healthy looking and I shouldn’t be feeling that way. But I was. And that continued into adulthood. Only just recently have I begun to learn what is going on in my body, and finally I have been able to gain some peace. I’m not crazy, and the things I was experiencing all those years were real. Only just recently have I begun to let others into my circle. My family and friends are just now learning all there is to know about me. All of those years of anger, self-doubt, shame, fear, sadness, and loneliness take a toll. I have to learn to trust again. As a society we need to stop putting people through this pain.
The truth is, the things you can’t see in someone are real, and people need to make sure to be careful about how they approach someone struggling with an invisible disability. Whether it is a physical disability such as MS, Fibromyalgia, Diabetes, etc, or a mental illness or intellectual disability, it is a tough road to go down because to the rest of the world you look “Normal”. I still do. (I think). If you took one look at me, not knowing me and my daily struggles, you too would probably think I am faking. But it is real, and those negative words saying we are “faking” or “crazy” or “it’s all in our head” can hurt people so terribly. It can cause damage that is sometimes irreparable. We need to help break down walls and get people talking. Don’t add bricks to the already solid foundations being laid by the media, society, and even some doctors. Those bricks just make the walls we build around ourselves stronger, and we then become like our disability. We become Invisible.