When episodic migrainuers doubt your migraines

When episodic migrainuers doubt your migraines.png

I was on this forum and migraines came up. Just randomly. And those with episodic migraines said things like:

I hate it when people fake they have a migraine because they are on the computer or working and when I have a migraine I am hiding in my room puking my guts out. 

Or

What kind of baby migraine do they have that they can do things with it? Or just not a migraine at all. 

I was shocked to read the things they all said. These are not quotes, just reminicent of some of the things being said. People posting online, don’t have migraines. Fakers.

I thought episodic people with migraine (those with less than 15 a month) would comprehend those of us with chronic migraine (more than 15 a month). We have the same pain after all. But they don’t. Not really. They understand the horror that is a migraine, but not the horror of that being your life. They cannot comprehend having to function with the pain. Having no choice but to function with the pain. And what that hell would be like.

The problem is: we have chronic pain. More days with pain than not with pain. Or every day with pain in some cases, such as myself. And chronic pain is hard to comprehend. All forms of chronic pain are hard to comprehend. You can understand Pain but not Endless pain. You can understand taking it easy and resting with pain, but not being forced to function with it.

It is a massive stigma to assume everyone with a migraine is going to act like you do with your migraine. In fact, I said:

It is the stigma. I hate that stigma. You can’t be on the computer with a migraine or working with a migraine… that isn’t a Real migraine. A real migraine makes you hide in your room throwing up. But it isn’t true. Some of us Have to work. Some of us use any pain distraction we can. It is the same pain, just the way we deal has to be different. But also some pain management techniques help with all that. It is not who is worse or not, because they all suck balls. But you can’t say ‘no you don’t have a migraine unless you are the exact same way I am with my migraines’.

Episodics can hide in their room, with ice, in the dark and try and sleep it off. Because it doesn’t happen often. They have the freedom and permission from society to do this because it is rare. You have permission to be sick. Assuming the company you work for isn’t a dick.

High episodics, on the other hand, will start to have problems with this… the closer they get to half a month the more they realize they have to function in the world in pain. Because 10 or more? Same quality of life issues as chronics have. So they would entirely get the complications I am talking about.

And chronics know we have to function somehow in the world with pain because we cannot spend our lives in the bedroom. Oh, on high pain days when we cannot function, we might, if we can. But we have to somehow have to have a basic level of function with pain. Some of us have to work, as much of a level of functioning, we can with work and in what capacity we are capable. And we also Know we need pain distractions, or the pain will drive us mad.

It is the same pain. Just how we learn to deal with it is different. How we cope with it. What we have to do while being in it. The level of pain tolerance shifts with chronic pain. To functional pain vs nonfunctional pain. Tolerable pain vs intolerable pain. And we walk that fine line every day. It isn’t just a migraine anymore… it is finely stretched out into this is a 6 migraine, a 7 migraine, an 8 migraine and a brutal 9 migraine. And our functionality levels vary at each from modest, low, to poor, to nonfunctional.

It is demanded of us by society to function. By insurance companies. By doctors and neuros. Accept the pain. And function. Because we have chronic pain and it is no longer permitted that we are allowed to escape from it. No, we must endure it. You are not longer allowed to be sick from them. You must cope. Accept. Suffer through it. You are no longer socially acceptable. Either you become disabled, from something they don’t believe you should be disabled by. Or you are forced to function like anyone else does and ignore your painload while you are at it.

And then it is doubted by others with episodic migraine. They can’t have a migraine. They work. They are online. They are outside.

No we are chronics. We exist in a world that is different. What we do to manage our pain is immense and complicated. It has to be in order to survive.

There is no winning for us. Stigma from our own. Stigma from society when we do not try hard enough.

But, people, it is the same pain. We have the same pain as you do. We are just not allowed to go into the migraine cave often as we would Like. And when they are daily, it makes no sense to go into the migraine Cave all the time. So we distract (go online, hobbies, Netflix… whatever). So we do all the things we can to manage the pain. So we just try to survive. When you see us online… we are just trying to distract the brain or visiting online groups to talk to others that understand what we are going through. When you see us at work, it is because we have no choice in the matter. We are just trying to live.

You can't even have what I have.png

Not even mentioning every migraine is different. Or how everyone copes is different. And you really shouldn’t judge people on how they cope. Or belittle their pain.

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6 comments

  1. And some people with episodic migraine have no sick leave and won’t make rent if they don’t work through it, or they had chronic migraine for eight years before finding meds that took it down to episodic and just still remember how to work through, or they have 14 migraines but not 15…and really how do you get either disability or keep a job right on that borderline. This just goes to show that being a spoonie, sadly, does not automatically convey empathy towards any other spoonies or anyone else 😦

    Liked by 2 people

    1. I did mention high episodics, which frankly have the same problem … same quality of life issues according to research. But these commenters were low episodics who all could and did take the time to go to a dark place and try and get rid of the migraine. They all said it was a nonfunctional pain and there is no way someone could funciton with one… therefore if they did, they didn’t have a migraine. And I still don’t get it, how someone with the same pain can’t understand someone else with the very same pain.

      Liked by 1 person

  2. Eugh – I think I’d be that infuriated by such comments I wouldn’t know whether I’d be rendered speechless or compelled to reply to their ignorance! It’s still pain, it’s still abnormal in the sense that ‘most’ people won’t experience up to 15 (who’s counting?!) migraines a year let alone a month. I think your rant is more than justified, and very well said.x

    Liked by 1 person

  3. *shudder* I can only barely imagine having chronic migraines (and I still don’t think I’m imagining it correctly). And, at certain times of the year, I almost have chronic migraines. I can feel them looming over my shoulder, threatening to come for a visit. Definitely episodic now. Butterbur helps with prevention. But it can only do so much in the face of two triggers I have no control over: hormones and the weather.
    I can and have worked through migraine pain because my previous workplace had rules in place for taking time off and they weren’t forgiving about leaving in the middle of the workday. So, I would work despite feeling nauseous, my eyes hurting from looking at the computer screen, and desperately wanting to lay down and sleep.

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    1. Hormones are one of the worst triggers I’d say. Those can be some brutal migraines for one and, yeah, we can’t do much about it. High episodic has the same impact as chronic though so it is pretty much the same thing so when you are close to chronic or in that zone that is basically what a chronic goes through. It is the working with migraine I have such a problem with. That constant pain and brain fog… and just error prone issues. It leads to a lot of problems. I loathe it.

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