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When the Hardest Part of Your Chronic Illness Is the Way People Respond to It

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I look in the mirror and don’t even recognize myself anymore. Where is the strong, confident, beautiful girl I used to be? Ever since I got sick, I slowly shut out everyone and everything in my life until I had my own world of books, music, doctors and my husband. I rarely left the house except for shopping and many, many doctor’s visits. Somehow that routine stuck. Two years later, that is still my life.

I stay home, clean, then relax all day, trying to manage my pain and hope I can make it one more day. On my good days, I manage to clean the house and maybe do laundry. On my bad days, all I can manage to do is move from the bed to the couch, and usually I don’t move from there, not even to get something to eat.

When I first got sick, I still went out with friends and family, still had whatever social life I could have while being in pain all the time. But after a while, I got sicker and started having more pain then I could handle. I started staying home more, relaxing. The longer I stayed inside, the less I got invited to do anything. Pretty soon the texts and calls stopped completely after not being able to go out due to my severe pain levels. After a while, I just turned off my phone and ignored everyone, becoming self-isolated. I couldn’t stand to go outside because I knew if I did, I would be in pain or I would see someone I knew and they would avoid eye contact and walk the other way.

This isn’t to make you feel bad for me. This is just what I do every day. I am not “lazy.” I am in pain. I do not sit around because I want to; I sit around all day because I have to. I do everything I can do make myself feel better every day. There is no cure for my disease, and I am not optimistic for any cure in the near future. I have lost many friends and family members over the course of my life, but not as many as I have in just these two short years. Yes, part of it was my fault, but part of it was also theirs for not trying to understand when I didn’t feel good enough to go to the movies or walk around town for a few hours. I’ve been told I’m making excuses because I just want to be lazy all day. I’ve been told it is too hard to be around me when I’m going through this, or that if I had just done something differently, maybe I would not have “caught” this disease. This is not something you can catch.

Chronic pain is no joke. Most people with chronic pain try to hide how much they hurt because they do not want to feel like a burden or because people get tired of them always saying they do not feel good. But do you know the hardest part of this disease for me? It isn’t the constant pain, or the severe lack of sleep due to pain. Its the fact that when some people ask about me and what I go through, they decide after listening that it would be too hard for them to stay around while I go through this. So they leave. Thinking it will be easier for them. It may be for them. But for me? That’s the part that hurts me.

Every time someone learns I have severe health problems, they give me that look like I shouldn’t be out of my house. Some of the comments I have heard either directly said to me or behind my back when they thought I was out of earshot hurt so badly, I started to believe those things about myself. For months I laid in bed, just thinking those things over and over again.

Life has not gotten much easier since I got sick. It’s still the same routine and same boring day after another. But there is one difference that wasn’t there two years ago: I am stronger now. I can finally feel good about myself again. When I start feeling down, I just look back and see how far I have come.

My illness used to control me. Now I control it.

Image via Thinkstock Images

Originally published: August 23, 2016
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