Thinking about chronic migraine disease and stigma over the decades I have had them is not really fun for me to do. Migraine disease has had a massive impact on my life and so as a result the stigma I have faced while trying to cope with it has made that extremely difficult.

Title: Chronic migraine awareness- Stigma I encountered
Subtext: We have to deal with the migraine disease but we also have to deal with the fact people do not 'get it'
Image: Woman sitting on the couch, leaning forward cupping face in hands

We don’t just have to deal with our illness. We have to deal with the inability of others to comprehend our illness.

Chronic migraines aren’t that serious

This is the worst stigma to face and it crops up all over. If someone has never had one they assume it is a bad headache. And they don’t even think it would be all that series to have it every day, as I do. Because I was working, had my facade on in order to do so… must not be that bad.

But even doctors sometimes didn’t quite grasp the torture that is chronic every day migraine attacks. That when I said I was having problems coping with them and working I Meant it. I meant I couldn’t focus well and was making a massive amount of errors. I meant I couldn’t think straight or remember things right. I meant emotionally and mentally I was barely getting through. I Didn’t mean that I was mildly stressed out and needed a little self-care. No, I meant that I was inches from burning out and suicidal ideation was par the course. But doctors not comprehending how much pain I was in no matter what I said or how I said it was pretty normal. They always seem to minimize pain. That is what is so bloody depressing because no matter what you do or so nothing ever changes or has an effect- they just expect you to deal with it. And eventually, you can’t.

You’re faking it

There is this idea among regular people that migraine attacks can’t be that frequent. That there is No Such thing as chronic migraine disease. So it was impossible that I was getting them so frequently. And apparently, they didn’t know the power of Google.

But if they believe you do have them that frequently then they often imply it is your fault- something you are Doing that you shouldn’t be, something you are Not Doing that you should be.

You’re faking it- because when I have a migraine I can’t function

In this version, a person does get infrequent migraine attacks. And they can’t function with them. They are laid out in a dark room for hours. So clearly if I am Working I must Not have Migraines. Well, fooled ya! Turns out any kind of chronic pain doesn’t play by those rules. With chronic pain society expects you to hide it, work, and pretend to function like any other person. Even though that is impossible, nevertheless, that is what the expectation is. So, yeah, I worked with them all the time. Not something I would recommend. It is not a joy ride by any means. And your capacity to function is really screwed up in various neurological ways but, that is just the way it is.

You just want to get out of work

This is a form of the ‘you’re lazy stigma’ that implies I just wanted a day off or out of work or just didn’t want to work like some sort of slacker. I was actually an ambitious person with some serious career goals. But life just doesn’t work the way you want it to and you can’t force pain to behave itself. I didn’t so much care how I was perceived so much as I cared that I didn’t live up to My standards when it came to this one. I loathed missing work. I hated that I couldn’t achieve what I wanted to.

The facade to maintain

When I was working it was a constant effort to try and hide the pain. It was a constant effort to try and function through the pain. It was a constant effort to try and think through the pain. It was damn exhausting. It takes a massive emotional and mental toll but there is no pain break ever. I didn’t respond to medication. My migraine attacks were daily. The intensity of them was high- likely because I was working through them and sleep-deprived. You get no downtime to just relax and have a break from the pain. Not ever.

Buy I was masterful at hiding it. Brushing it off with a laugh and a joke. Because you have to in customer service- you can’t show suffering. I’m positive that contributes the invisibility of it. Because on the days I missed work and had to stay home, no one saw how sick I was at home, only the days I could keep up that facade. It is ironic how society demands we perfect this facade because it demands we function with such pain and by doing so it essentially makes us so invisible that people feel like we must not be in pain at all. Of course, people that know us well are not so easily fooled. But a whole lot of people are.

Internalized stigma

Years and decades of stigma take a toll on a person. All the things you used to think about yourself and sustain your self-worth begin to crumble under the onslaught of other people’s stigma- until you begin to own that as part of who you are. I did think I was a failure as a person. I did think I had less worth than other people. I did think I was functionally useless. I did think that I was weak and if I just pushed through the pain better it would be better for everyone.

It takes a whole lot of time to realize that all the negativity I absorbed affected how I thought of myself. Well, destroyed how I thought of myself. And with the constant assault of pain, the lack of hope in any effective treatment, that lack of self-worth sinks you into a pretty deep depression.

I don’t know, I didn’t get very far trying to exist in a world that wanted me to push through my pain and pretend to be normal. It was like bashing my head against a wall. For a bit, I could pretend. Fake it till you make it mantra. But then, I just couldn’t and I would crash and burn. Then I would get up, shake it off, try again. And repeat. And repeat. It was horrific really. You’d think somewhere somehow society and the medical community would have better pain management than that. Mostly, they just leave all that up to you. Figure it out… self-care it, meditate on it, take some vitamins or something, try some alternative stuff… because we got nothing, man.

I am on disability now, which happened because of all my health conditions combined. But I never was because of the migraine disease and I find that so strange. Because the chronic migraine disease made life not worth living when I had to push like that. But no one cared about that. Because it wasn’t seen as disabling to insurance companies and some medical professionals. It made me suicidal and almost killed me… but, yeah, sure, whatever, not disabling. Perhaps they should try it on for size every day for a couple of decades and see how it works for them, eh?

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