When I Finally Started to Accept That I Am Disabled
If there were two groups of people, one healthy and one disabled, would you know to which you belonged? Most people do, but for me I would stand in the middle and struggle to know which group I belong to. I mean, in my heart I know – but I don’t feel like I really belong.
You see, the world sees me as “sick” or disabled. But I struggle to identify with that designation because I don’t look sick.
This recently hit me like a ton of bricks as I read a Facebook memory from eight and a half years ago. It read, “Elaine is wondering why she keeps hurting herself! Ugh, this is getting old.” That was back when Facebook statuses started with “is” after your name. That was the beginning of this journey for me. I know now why I kept “hurting” myself. In only a matter of months I would hear a doctor tell me, “You have rheumatoid arthritis.”
But hearing myself say those words doesn’t come easily, even almost eight and a half years later. It was during a doctor appointment about six months ago that I heard the words come out of my mouth. I said it, the full name: rheumatoid arthritis. I usually will say I have “RA.” To me, that sounds far less serious and much more glamorous than “rheumatoid arthritis.” Rheumatoid arthritis just sounds so scary. But those words came from my mouth and I admitted it to my rheumatologist. Not that I needed to admit it to him, since he has seen my blood work. I admitted to myself that I was disabled.
Now, don’t misunderstand me. I have a disability parking permit and there are days I don’t use it and there are days I realize I need it, like the days I can barely walk into the grocery store and I know I will have absolutely no energy as I walk out. Admitting I am disabled comes easier on those days because it feels like a choice I get to make.
My self-realization started about a year and a half ago. My doctor asked me to be a patient representative on a panel for a local community rheumatology seminar. It was the first time to admit to people I did not know that I was “sick.” I often speak about RA on my Facebook page or at work in my circle but that is in the safety of “my group.” Those are people who know me outside of my diagnosis, but the patient panel forced me to admit to the public and to people I did not know that I was “sick.”
I admitted to one of the patients who was attending that it was the first time I told people I did not know that I was sick. She looked puzzled and said I should “own” my RA – that it was me. But that is the point: it isn’t me, it is only part of me (and a much bigger part of me than I want it to be). I have tried for years to not be RA, to not be my medications, to not be a patient – but I am. I am RA, I am my medications, I am a patient. But, I am also a wife, a daughter, a sister, an aunt, a friend, a godchild.
I can be more than my illness, but I can’t escape the fact that I am not healthy. I can’t pretend my way into good health. And by accepting that I am disabled, I have found an amazing group of people who understand what it is like to live in my shoes. You see, we have a superpower most do not possess. Many of us know what it is like to stand in both the healthy group and the disabled group. I didn’t want to admit “it,” I didn’t want to say “it,” but my name is Elaine and I am the face of a disability.
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Thinkstock photo via Val_Iva.