Shame in the pain

There shouldn’t be, but there is a lot of shame that I have.

Shame from being in pain. Shame from being less able bodied than anyone else in their 20s should be. The shame from knowing I need to use my wheelchair…but being too afraid to.

I have a chronic, progressive, degenerative neuromuscular disorder. It’s called myofibrillar myopathy type 6. It’s best compared to muscular dystrophy. My 3 children have it as well, and it is brutal. My oldest son (almost 6) has a wheelchair already, and my 4 year old isn’t far behind.

For my entire life, I was told that there was nothing wrong with me. That my pain wasn’t real, that I must be “being dramatic”, that no one could find what the problem was.

Sure, I’ve had well over 10 major orthopedic surgeries, but there’s nothing really “wrong”. Okay.

I didn’t get my diagnosis until my kids got theirs. I’ve only had a firm diagnosis for 3 years of my life. That leaves about 25 years of my life undiagnosed and misunderstood.

Some days, the laundry is just too hard to do. Some days, I’m simply in too much pain to clean. Or do chores. Or cook or clean or take a shower or do anything extra. Some days, it takes all of me just to get through the day.

And I feel a lot of shame in that.

I don’t teach my nearly 6 year old son to be ashamed of his wheelchair. He doesn’t know he’s any different than anyone else. So I don’t know why it’s different for me. I don’t know why, for him, I don’t feel or teach him shame, but for me, it’s all I feel.

I thought that once I was done being pregnant and my body went back to “normal”, my pain would decrease again. But I’ve been really struggling, and it’s a scary feeling.

I don’t want to be trapped in a body that betrays me. I feel guilty that all of my kids inherited this from me.

Some days, I wish I were strong enough to admit that I need help and that I need to use a wheelchair. I don’t like this feeling. And I don’t like admitting that I need help.

But I do. I need more help sometimes. And I guess that okay.

I do hope this is just a bad flare up and not my new normal, but if it is, then I guess that’s just something I need to live with.

If it isn’t shameful for my kids, it shouldn’t be for me either.