What People Don’t Understand About My Pain


What do people see when they look at me? They see a middle-age woman who looks healthy but is on crutches. It looks like she may have injured her foot or ankle. Otherwise, she looks a bit overweight but normal.

What they don’t know is that if they are seeing me out of the house, I’m using my small amount of precious energy to be there, and I will crash when I get home and have to take a nap.

What they can’t see is how much pain I am in to be standing up and using my crutches to move about. That my foot is burning, the sole of my foot feels on fire and as I stand there, I can feel my foot swelling up

And if I sit down in a chair, the front of the chair will dig into my leg causing pain there. My whole leg will ache and the muscles will cramp and burn. My foot will swell more. My lower leg will begin to burn.

I’ll start to get very tired, but I’ll hide it.

And I will try to keep smiling and have my friendly face on when they ask, “Oh, did you hurt your foot?”

They don’t know I’ve been on crutches for a year and a half, and that right now there is no end on sight. They don’t know I have an incurable, progressive, painful disease. They don’t know about the five prescription bottles in my cabinet to help manage the horrible pain

They’ve never heard of CRPS because complex regional pain syndrome is a rare disease. I’d never heard of it, either. But I had the rare luck of getting it after an injury, and then I got to learn all about it.

They don’t know about the McGill Pain Scale, where CRPS ranks the highest of all conditions at a 45/50. Amputation of a digit and unmedicated/unprepared childbirth are the next closest, to give you an idea of how painful that is.

People don’t know that this pain is 24/7.

And they don’t know that I still get up every day and take care of my kids, and I do it with a smile because they don’t need to know about all this pain, either.

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Lead photo by Thinkstock Images


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