It is migraine awareness month
So why do we need migraine awareness?
I have chronic daily migraine with aura, and I also have persistent migraine aura… so auras all the time whether I am having a migraine or not, every day. And I have vestibular migraine with relentless dizziness and vertigo.
A lot of people think migraines are just a ‘headache’ albeit a ‘bad’ one.
I have had migraine since I was 20, and possible migraine aura since I was 12 (coincidentally that is when my visual snow started). Migraines, unlike an occasional tension headache, ruins lives.
With daily pain it is difficult to function, which is what society expects from us. If you occasionally have a migraine… society thinks it is fine you go home and rest in the quiet dark. This is something high episodic and chronic migraine people can’t really do. Hell, many of us no matter how many migraines they get is sometimes a luxury we don’t have. It amounts to a lot of untreated pain, absents from work, and presenteeism (we are There but not mentally there).
We struggle to hold down jobs, we fail at it, some of us go on disability and some of us try to push through the pain because they Must work, while others try to make sacrifices and turn to flexible work, part-time work, so we can have some money coming in, but sometimes that means we no longer can do the career work we did and we struggle with significantly lower incomes.
Migraine costs us a lot.
- Compromises for work or going on disability
- Having financial instability and often taking leaves of absence (It has completely destroyed my fiances, having unpaid leaves, and soon I will ruin it some more, because I have no choice. We had two full-time incomes. Then one full and my part-time. And we struggled to maintain. Then the unpaid leaves, draining any savings and maxing credit cards. And now I am on leave again, fighting to be paid and not enough to manage. This is a consequences we can really struggle with finding a way to support ourselves.
- We cannot socialize as much because pain levels can go from a 6 to a 9 in seconds flat.
- Symptoms can be as bad as the pain… Like the constant vertigo. But all of them decrease functionality, productivity, and make us unreliable due to illness. Employers want to know you will be there 100% effort. But we? We sometimes can’t be there at all and we can never give 100% with a migraine. Takes too much brain power to try to think through the pain.
- We have to work on our self-worth… if we are not working what is our ‘identity’.
- We often are plagued with guilt like it is our fault we cannot function.
- Everything we do is carefully planned for contingencies when we go places… our emergency migraine bag.
- All the symptoms from nausea, to vomiting, to Diarrhea to brain fog and concentration issues. Vertigo, auras like aphasia and obstruction of vision. And all of these can impact us as much as the pain does. But that pain? Is extremely hard to function through. Errors always happen. Confusion about polices at work or what we are doing.
And we feel this isn’t a life… it is an existence.
It isn’t just pain, it is suffering. We have an optional reaction to the pain. We have a mental reaction to the pain. We are more likely to commit suicide, we have stroke and heart attack risk, and more likely to have anxiety and depression. Sometimes we feel powerless with doctors and insurance companies deeply affecting our actual quality of life, without anything we say mattering. We can then feel hopeless that anything will ever change.
It is a disease. And when it is high episodic or chronic it becomes very difficult to effectively manage. Finding a treatment that does anything for frequency of attacks or the intensity of attacks… can take years or decades to figure out. And some of us don’t respond to medication.
Yet people continue to minimize our pain. Call it ‘just a headache’. Forcing us to function with unmanaged pain… which from experience pushing through the pain doesn’t work forever… it pushes back and in my case that was developing Major Depressive Disorder and being suicidal for years, until I had a suicide attempt. So don’t try and tell me this isn’t a serious disease. Not when it almost killed me and has killed people I knew in the community. Every one of those loses matter and if people took this disease seriously those people could have had proper pain management, but even then, the pain is relentless. Any loss at all is one too many.
The stigma is pervasive. When people want to call hooky from work the number one excuse they give is ‘I have a migraine’ which is insulting to those of us that have to fight it every day. Stigma like I was failing everyone eventually destroyed my self-worth. I couldn’t BE what they wanted, I failed to thrive… and I blamed myself as a person for it. We hear the stigma and sometimes we take it on to ourselves. We self-stigma, from just the repeated exposure from it. It beats you down.
And that is why we need awareness. So stigma is reduced and so we don’t take that stigma on and feel shame, self-loathing, and guilty for something that wasn’t a decision but a disease.