We all have a pain story. I ask how did this happen to you. And you tell me… your pain story. Generally it is facts and about diagnosis and sometimes misdiagnosis. Our pain stories can be complicated because sometimes diagnosis is complicated.
But what pain means to us is vastly more than that. We think about it often. How it affects us. What we compromised or gave up for it. How it affected our loved ones. Its role in our lives.
And in there often gets tangled up ‘self stigma’. We pick up the stigma from Around us or that is Implied and we absorb it into our own story and then inflict it upon ourselves. We are basically internalizing social myths and prejudices.
We are a failure- We have given up on life. We have no natural resistance to what life throws at us and we are a failure at handling life in general. Gee thanks. Little harsh on that one. But the fact is, we often reflect this one back at ourselves especially when we cannot work… well we are a failure then. It isn’t just that we are exceeding our pain limits and cannot work, it is that we failed as a human in society. Sounds dramatic, but we think it don’t we?
We are weak- like weak in character. As in it is a flaw we have. Not strong enough to handle things other people handle. Fragile. Emotionally weak, if we happen to have a mental illness.
We are lazy– Not that we are fatigued. Or having a flare. Or need to pace ourselves. No, we are actually just lazy. And it can happen that We can feel that we are inherently lazy. Even thought we know we are fatigued. Or we might suffer from motivation issues due to depression as well.
We are naturally stressed out people– I have heard this referenced for migraines and FM. And sometimes I have heard it said back to me by people with those conditions. That we just have ‘high stress’ and that it ‘affects us more’ and we ‘can’t handle it well’. And maybe that is why we got sick in the first place? Er. First of all positive stress is very healthy and how we even get things done. And I think we are stressed bodily after we get chronic pain, and generally handle it better than most would given the situation we deal with.
We are worthless to society– we are not productive, we just suck off the system. We are a drain on the system. We don’t actually Do anything so we have no worth. And we can sometimes feel this and internalize it and feel horrible. Because we are what we do is so important to people. That people forget People are important and intrinsic worth is important. Who you Are as a person is important.
I could likely name more. You might have even encountered more. I know I have encountered more, but I have never internalized them. Like I am faking. Like I am not in as much pain as I say that I am, because I am complaining, exaggerating or because a am a woman and therefore just expressing it in a more exaggerated fashion. The ‘it is all in your head’ stigma… where they deny what you have exists and are implying you are crazy… because being mentally ill to them is also stigmatized. So to them ‘all in your head’ is equally as bad an option. The whole you don’t have a disability because it isn’t ‘physical’ and by that the person meant visible. Lots of stigma out there.
So what do we do? We have sucked in this abhorrent stigma and made it our own.
When we feel bad about our pain or about our illness analyze where that feeling is coming from. Why are we feeling bad? Do we feel worthless? Why would we feel worthless? Is it because we can’t work? Then we know we have taken on the stigma of we are worthless to society because we are not productive by certain people’s standards. Question where your negative feelings about your illness or pain are coming from. We all have these sorts of negative beliefs and ideas about illness that sneak in there.
I remember when I was diagnosed with fibromyalgia there was a massive stigma about Having it. People debated whether it really existed. Called people just lazy and wanting to get on disability. And said it was just ‘all in their head’. It made me feel ashamed and embarrassed to admit I had it. So for a very long time I never mentioned it to people I met. I refused to talk about it even when we were friends for some time. I refused to mention it to employers. As a result part of me still thinks other people think this way. Part of me feels worthless when I am not productive enough because I fear being seen as lazy.
Another example is depression. I refused to mention to anyone I was depressed even though I knew that I was. Including my doctor, due to medical stigma. Often with medical stigma if you mention you have depression they immediately minimize the chronic pain you have… believing all of a sudden that is all in your head. That it is All depression. I had actually heard of it happening. And when i was younger and mentioned depression to a doctor he completely ignored my pain which then delayed further my diagnosis. Even though the depression was due to the pain. Often we feel weak and ashamed with depression as well, again as though this is a character flaw and this is from internalizing the pervasive stigma around mental illness.
The fact is the stigma around us that we have heard, read and encountered does have an internal influence on us, unfortunately. It is sometimes hard to notice but it is there.