When I Felt Like My Illness Stole My Identity


Prior to having scleroderma I had a fit body, long hair and a good complexion. I was active and energetic. I ran my own business, worked long hours, and I conquered a 53 mile commute twice a day – in Baltimore and Washington D.C. traffic, in a Jeep Wrangler. I even traveled alone every quarter for work. I was also happily married and I had an active social life. I loved it all. I was good at it. I had a lot going for me.

As scleroderma started changing my body’s functionality and then appearance, I started to become self-conscious – something that I had never been before. I’ve always been confident in who I am. I started feeling like scleroderma stole my identity. Like it changed who I was.

Some days, I allow having scleroderma to affect that part of me in a way that I had never experienced in the past. On those self-conscious days, I wear clothes that cover my bony shoulders and the sores on my arms. I wear pants or skirts to hide the thigh gap that I fear others will see as creepy. I cover the blotches on my face so my complexion looks “normal.” I don’t do selfies and avoid being in pictures if I can… if I even go out.

Often on these days, I find it “safer” to stay home. On these days, comments from random preteen girls to their moms in Target like, “That girl is way skinny! Did you see how skinny she was?” can make me head directly to check-out, fighting tears to then lose it in the car… leaving the store without the one item I actually went in for.

Then there are days that the pendulum swings in the other direction and I don’t care how others might view me. On those days, I don’t care what I look like to the world. I am happy with me and all that I have persevered through with this disease. On those days, others can just “step the eff off!” I’ve survived a lot and I’m not going to hide that. On those days, I wear my favorite tank tops and skinny jeans. I don’t hide the blotches around my mouth. I don’t care if people stare at my hands or watch me fumble at the checkout line as I try to be sure to not hold others up.

I sometimes look at pictures of myself from my life before I had scleroderma and think, “I don’t know who that woman is. She doesn’t exist anymore.”

Here’s the thing… that is not true! That woman does exist. She’s just different in so many ways. Some ways are less than ideal. Other ways are absolutely beautiful.

Here’s why… I was not all of those characteristics I described above. I had those characteristics and traits. In the same way that I am not scleroderma. I have scleroderma. It’s not who I am. It doesn’t define me. It doesn’t present as my “identity.” It’s just a part of me.

So, you see, scleroderma didn’t steal my identity. If you feel lost behind your disease or chronic illness, remember that is not who you are as a whole. It’s just a piece of you.

We have to reinvent ourselves all the time, anyway. Don’t let a chronic illness be a roadblock. It’s part of your life, learn to use it for you in some way or another.

We can not become who we are without having been who we were.

In the last 15 years of this disease, scleroderma has affected my life in countless ways. It has most obviously altered my physical body, but my body is just my vessel. It’s not all of me. It doesn’t define me. My brain.
My heart. My soul. My character. Those all come together to make me. Who I am… my “identity” is a collection of all of my traits and characteristics.

Am I 100 percent who I was back then? Of course not. I don’t believe that anyone is. At least not anyone who is growing and maturing through life. We grow and change as people throughout life. Our experiences change us. Maturity changes us.

Having said all of that – I am not always confident in that. Quite honestly, I still waiver back and forth. And that’s OK… it’s part of who I am. It’s part of my humanness.

Some days I persevere and rock on like a boss. Other days, not so much. At the end of every day, I am not scleroderma.

I am me – whomever I want that to be.

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