Migraine: 101

For those of you who are close to me, you know that I struggle with chronic migraine. Like many other disabilities, this one has its wealth of misconceptions and misinformation. I do not parade myself as an expert in the area, but my experiences serve my knowledge on the topic, as well as casual research I have done over the years.

A quick rundown on this disease:

• Migraines are defined by the American Migraine Foundation as "a neurological disease with no cure. Symptoms vary from person to person, but the most common include head pain, sensitivity to light and sound, nausea, brain fog and dizziness."

• Migraine affects 1 in 4 households in the U.S. and more than 1 billion people globally.

• It is largely misunderstood and misdiagnosed—if diagnosed at all.

The attacks are not something you get "used to."

For me, I have chronic migraine with aura. This means that I have several migraine-attacks a week with varying intensity, and I usually can tell when an attack is approaching about 30 minutes-an hour before (aura). My attacks are characterized by excruciating head pain, worsening pain triggered by light and/or sound, nausea, visual disturbances, mood changes, pain radiation, and more. My attacks seem to be triggered by a number of things, but I suspect they are predominantly hormone driven. Although my case is defined as "not intractable," meaning the attacks respond well to treatment, I can guarantee you that it is definitely hard to manage and treat, and it has been a struggle since I was a small child. I began my first migraine treatment when I was in 1st grade, with little-to-no success with treatment until recently. Yes, this disease is not new to me, but it has become more disabling over the years. The attacks are not something you get "used to."

The visible pain of an invisible disease.

I can give my rundown of horror stories about medical mistreatment and list the tens of medications I have tried in just the last few years, but that would detract from my point-- although this disease is pegged as "invisible," the pain is very visible. My lovely mother can always sense when I have one just by looking into my eyes. However, she has migraines too, so maybe it is just the power of her empathy, not just sympathy or pity. But to other people who don't know this disease and its effects, it may seem invisible, or even fake.

For years, I would tell coworkers or managers that I was having a migraine attack and could not work. In the moment, I feel their frustration with me. They want me to fight through it, and if I really need to not work then they want me to have told them sooner so they can prepare properly. When they suggested I took some Advil and drank some coffee, I would try and educate them about the differences between a migraine attack and a headache. Because it is invisible, my greatest and sometimes only advocate has been myself. And who would trust me if I were riddled with attacks several times a week? I must be the girl who cried "wolf".

This becomes a tiring task, and eventually I just stopped trying to explain. No one was going to understand what I was going through, and it’s not like I would wish the disease on anyone just so they could understand. So I kept to myself. I remained without a treatment plan because I was tired of doctors not listening, and I pushed through work because I was tired of trying to justify my disability.

I wish there was a cure.

I have a wish list in regards to migraine, and I doubt I will be getting any of these for Christmas but here’s to hoping:

• I wish there was a cure.

• If no cure can be found, I wish that more studies can be done about migraine and all it entails.

• I want there to be greater information about this disease. If you or a loved one have migraine or other headache diseases, please do your part and research it.

• I wish insurance companies didn’t make patients try a list of old, ineffective medications before moving onto treatments with more promising results. This is how I lost hope for years, and I know I am not alone.

• I wish employers treated this like any other disability. It is a big ask, but my workplace does a good job at this so it must be possible.

Without there being a cure to migraine, it is easy to lose hope and feel that there is no work that can be done. I have been there—but there is hope. After I got through all the medications I had to try before getting to the newer options, I finally have a preventative and an abortive treatment that seems to be helping. I have a great care team, people who actually listen. I have the most supportive friends and family in the world. (Sorry for all the canceled plans, btw.)

If I could end this on one final note, it would be that migraine advocacy is disability advocacy. To those of you suffering alongside me and the millions of other Americans with migraine: I see you. I hear you. I feel your pain. Whatever you do, don’t stop fighting.