The Mighty Logo

When Your Symptoms Aren't Your Chronic Illness

The most helpful emails in health
Browse our free newsletters

My shoulder is throbbing and has been for three weeks. The pain radiates across my collarbone, down my arm, and into my wrist. It also shoots right up my neck. I can’t lie down, I can’t clean, I can’t cook, and I and I can’t figure out a non-painful position for sex or even cuddling.

Lying down hurts. Sitting in church or an office hurts. Being cold hurts. Cuddling and other things aren’t really happening right now.

My husband and my daughter are taking on extra tasks to compensate for what I can’t do. They do it happily, but I still hate that they are doing so much.

What ticks me off is that this isn’t my chronic illness.

It’s a case of ordinary, run-of-the-mill, it-can-happen-to-anyone tendonitis.

My mast cell activation disorder (MCAD) has actually been behaving itself the last several weeks (probably because I’ve been spending a significant amount of time sitting in my recliner because of the tendonitis).

The hardest part of having a chronic illness is that there really are only two other people (the ones I live with, the ones most affected by it) who understand what it means from day-to-day.

Other people wonder why I disappear and are concerned and puzzled. I look OK. I smile. When I am asked how I feel, “fine” comes out of my mouth way so easily. So automatically.

But I live for the times when I am functional – so that I can do things that allows me to give a reprieve to my family. I want to enjoy other people and activities. I want to feel most like myself.

This should be one of those times.

But I get knocked down by something unrelated – a cold, the flu…shoulder tendonitis. It doesn’t seem like something different to anyone else. It seems like things are getting worse…because I didn’t go to church…again. I backed out of a dinner date…again. I slept in the recliner….again.

My husband is cooking dinner, my daughter is cleaning the kitchen and taking care of the dog, all while I sit in my comfy leather prison with a bag of frozen peas pressed up against my shoulder blade.

I have energy, I have focus, I have desire.

I am lonely, exasperated, and angry.

My shoulder is healing, I know it is. And just like with my MCAD, some days are more bearable than others.

Last weekend I went to a baby shower at church on Saturday and was fine until the last hour. On Sunday, I missed church.

On Monday I had coffee with a new client. On Thursday, I missed a board meeting that I serve on with that client.

It looks just like my chronic illness on the outside.

But it’s not. I swear.

It’s just something else that sucks.

Getty Image by natalie_board

Originally published: February 27, 2018
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home