Migraine & Disability: A Battle Fought Round the World

By Wanda

There are few things you need to know when talking migraines and disability. First, either you, or someone you know suffers from migraine—and no, not just because you are reading this blog. According to NIH and a 2015 study, migraine effects roughly 1 out of every 6 Americans, and 1 in 5 women over a 3-month period.

Headache disorders are the most common form of nervous system disorder. In the Global Burden of Disease Study, updated in 2013, migraine on its own was found to be the sixth highest cause worldwide of years lost due to disability (YLD). Headache disorders collectively were third highest, according to WHO. Migraine not only effects personal health, it also effects job place performance and mental health of the sufferer and even caregiver.

It’s simple: Migraines affect the sufferer, those around them, and even the community they live in due to missed pay and expensive treatment plans. How? It’s simple bookkeeping; if you miss work, and thereby miss pay, but have to spend money on treatments, you have less money to spend in your community.

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So, we know migraines are prevalent and we know they cause the sixth highest rate of years lost, but what that MEAN? “Years Lost” is a term used by the medical community to determine what a debilitating disease or disorder does to the productive or healthy lifespan of a person. There’s some math here, thanks again to our friends at NIH.

In simple English, the worldwide the outlook is grim: WHO tells us on average, only 4 hours of undergraduate medical education are dedicated to instruction on headache disorders. A large number of people with headache disorders are not diagnosed and treated: worldwide only 40% of those with migraine receive professional diagnosis and treatment. Staggering, isn’t it? (By the way, I do NOT math).

Okay, you have the stats, you have the math (ick) so, if you are still with me, I’m guessing you want THE STORY. First let me be the one to break it to you—the US Government DOES NOT consider migraines as an applicable disease for Disability. Let me repeat my self: The SSA has no standard disability listing for migraines. You can search the net high and low, and it will tell you the same thing. Let me amend that, the HONEST sites will tell you the SSA has no standard disability listing for migraines. Wait… breathe… breathe again… now read my story, you might be ready.

How Migraines Disabled Me

Migraines have tormented me since my earliest memories. They have been my constant companion through school, softball, band, marching band, and motherhood. They continue to torment me even as I type these words to you. I have learned to function through the pain, the nausea, the auras blinding my vision, and the sometimes loss of use of my left side. I do not fake being sick, rather, I fake being well. I have always racked being well, and have gotten rather good at it. Even now my service dog is on my lap trying to prevent me from writing.

There is really nothing new under the sun as far as how disabling migraines can be, bothering that is going going to shine a bright light on how to obtain disability (SSDI) because of migraines. I can tell you how it went for me:

My first application in filed in Manassas, Virginia was “lost.” I took that as a sigh to keep pushing forward, to keep working, to debt myself the care and treatment so desperately needed. My journey took me from a position working with the Episcopal Diocese of Washington, to working in a local grocery store market, to moving to the Blue Ridge Mountains were I worked both as a Pharmacy Tech, and as secretary.

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Every move, every job, every change was pulling me further and further from being able to work and provide for my family. I reapplied and was denied. While my doctors said I could not work, SSDI didn’t see migraine as a disability. So, I got one of those TV layers and I did the leg work myself. I found the NIH stats, and the WHO stats, and learned about lost years and diminishing returns—I learned to treat my life as a commodity, and I fought. I learned more about myself and migraine and the toll they take on a family and on a community. I armed myself with evidence of 6 day hospital admissions every 6 months for what amounted to chemo for migraines.

Then came the fateful day: my day in court. I was so encouraged, so naive. While the judge SYMPATHIZED with me, she could not grant me disability. Denied. Again. To my face. Denied because even though WHO and NIH say migraines are debilitating, the Social Security Administration didn’t.

Let’s step back—on one hand we have NIH and on the other SSA, both government agencies, both US government agencies, yet there is no mutual agreement. So, what to do… FIGHT, dig up more research, detail more treatments, search back through my medical history for the cause of my migraines—but ALWAYS FIGHT! Fight LOUD. Fight STRONG. Show the world what migraines really are—don’t hide them, don’t deny them, SHOW THE WORLD WHAT WE DEAL WITH ON A REGULAR BASIS.

Then, after six years, a year after my first court hearing, I hear the magic words FROM THE SSI doctor, “I would grant her disability on her migraines alone”. Even now that phrase sends tingles down my arms and spine. “ON HER MIGRAINES ALONE.”

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Redemption, someone on the OTHER TEAM who understands. A lifetime of suffering validated by a voice over the phone, someone who I’d never met, who read the research and the stats and the doctor’s records, and the hospital records… triumph!

ON MY MIGRAINES ALONE.

So, how do we bring about change? We share research, we share our stories, we stop hiding, and we stop faking being well.


 

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