People say that people with disabilities are so strong to endure what they do.
And with chronic pain I often get asked ‘How do you do it? Handle that pain all the time?’
To the first, calling is strong is that sort of positive labeling that we often see that comes with inspiration porn. We are ‘strong’ and ‘brave’. And there is no disability except a bad attitude. In fact, we are, just us. We are not here for anyone’s inspiration. We are just like anyone else. We have good days and bad days. We cope well and sometimes we struggle. We are just people.
To the second, how I do it. Well that isn’t strength at all. It is necessity. A grim, determined necessity. Because I must. The other option, of not, well that occurs to me as well because it isn’t easy. Maybe it is an acquired strength. But it doesn’t feel like it. Feels like a strength wrapped in a weakness. Because it is a constant exhausting battle. And I am tired. But none of us can doubt we learn to cope. We develop skills as we go along. And I cope with more pain now than I ever did. Smack this pain that I have now into my 18 year old self all at once and that old me would have got to the ER thinking she was dying… she would not be used to This pain. We get used to a baseline pain. But we are limited by it as well. Very limited by it. Is that strength that we endure it or acclimation to our baseline and pure necessity we survive the high pain.
Strength though can be talked about in other ways when it comes to me and my chronic pain. And that is as a facade. As a mask. Appearing strong because I don’t want to seem weak. Pushing through the pain because I don’t want to seem weak. Hiding my depression because I don’t want to seem weak. Partly this is my own personality. I am reserved and I don’t emote much when it comes to these sorts of things I consider to be very personal. And partly it is self-stigma… that somewhere along the line I decided mental illness is a weakness and that not coping with pain is a weakness. I know I got a lot of that from experience with doctor stigma. But the rest comes from society. So I self-stigmatize. Stigma doesn’t always come from the outside you see. We experience it all our lives, then we internalize it. When someone implies I should feel guilty for missing work and letting down my co-workers on a day I was completely non-functional from pain… I feel guilty like I should be ashamed of being ill. Why is that? I could Not function. I could not drive. I could not move. Yet… shame and guilt. Because someone implied I should and I internalized that stigma and felt it.
So I don’t feel strong. I feel i present a really strong mask. A fine facade. And beneath that I struggle a lot to maintain. I have this thing. This quirk. I don’t like people to know how much I suffer. I don’t communicate it. I don’t talk about it. And I hide it well. Because I think of it as a weakness to show emotion. And a weakness to not be able to cope. And a weakness to show pain. And I am very uncomfortable with emotional conversations. I avoid them like the plague. Telling someone about what is really like to be like this day in and day out would let my emotions out. I have done it a few times and that is a few times too many. This very contained personality of mine is actually petty par the course for a INTP personality type. If you do the Myers-Briggs personality test. My type doesn’t do well with emotional conversations. But we do well with rational ones. I can talk about my pain abstractly and rationally. I can talk about research papers. I can discuss. But I won’t go to that emotional zone. The final reason I won’t aside from personality, being reserved, thinking it is a weakness… is I have a lot of emotion beneath the surface of my facade in the form of depression. I feel like if I open that up it would be like a floodgate and I don’t like the idea of losing control and breaking down. I can feel it sometimes, hovering, at the edges. Profound emotion. I would much rather think about it in my head and try to think through it than let that out.
So I am not strong. It is a mask I wear. It is self-stigma. It is just a way I present myself. The only strength I have is in the coping skills I have learned the hard way over the decades. The only strength I have is in choosing to fight rather than not.