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5 Migraine Stigmas That Need to Be Broken

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I spend all night tossing and turning, hoping I’ll find a magical new spot to rest my head where the throbbing pain isn’t too bad. I wake up and I’m far from rested. I slept for 10 hours. So why do I feel like I could sleep for 10 more easily?

I force myself to get up. Thankfully I have off today and have a very small list of things I want to accomplish, only one of which involves leaving my apartment.

I brew my coffee. I mix lemon, rosemary and peppermint essential oils and start diffusing them. I’ve found that this helps. I don’t know why. This is meant to be an uplifting blend. Maybe uplift is all I need some mornings.  

Normal people spend their days off running errands, cooking, doing chores, meeting up with friends, spending time outside… gosh the list goes on and on. I shouldn’t say normal people. I should say healthy people.

Stigma #1: Chronically ill means abnormal.

Yes, it is true. Many times we refer to people without disabilities or individuals who don’t have chronic pain as “normal.” I sit here and hope that one day I will be “normal” but it isn’t normal that I’m hoping for. I am perfectly normal. I get up every day. I clean my apartment. I go to work. I attend school. The only difference is that these normal activities don’t happen as quickly and are usually completed paired with intense pain.

Maybe we should say healthy people, or people who lead pain-free lives. Healthy isn’t the best word, because I lead a “healthy” life. I eat primarily fresh foods. I exercise to the extent that my body allows me to. I get enough sleep. I take time for myself. The only thing that isn’t “healthy” is in the doctor’s office sense of the word, where I have a neurological disorder, that quite literally means my health isn’t at 100 percent. It never will be.  

Stigma #2: Migraines can be cured. 

There are hundreds of thousands of people who have found their magical concoction of drugs and therapies that have dramatically reduced their migraine frequency. There are thousands more who may never find that sweet spot.

But the thing is: Being on five different types of medication, watching every bite of food that goes into your mouth, avoiding many things like alcohol and berries and chocolate and paying thousands a year on chiropractic services, massage therapy or acupuncture, doesn’t to me equal a cure. It’s constant treatment that is working. But stop that treatment? I won’t. I don’t want to go back to the constant pain.

The first migraine prevention drug was literally just released. It’s 2018. Who knows how effective it is. Most people won’t find out because it’ll probably cost so damn much.

Stigma #3: It’s “just” a headache.

Oh, how we’ve all heard this one. I could go into a hundred details as to why this isn’t true, but I’ll just break down the differences very briefly.

A headache typically is something that occurs infrequently and isn’t accompanied by additional symptoms. A headache can be caused by eye strain or inhaling too much perfume, or as a side effect of another condition such as a cold or the flu.

Headaches can occur much more frequently, and various types exist, such as tension-type headaches and cluster headaches. Both of these are more severe than your average “headache.”

Now, pair your average headache with more than “just” pain. Intensify the pain. Throw in some nausea. Start having abnormal vision – maybe you see spots, maybe you lose your sense of depth perception, maybe everything gets blurry. Now your balance is gone. Now you’re stumbling to create a coherent sentence. You’re hit with fatigue. You might get really hot or really cold.
These are only a handful of the growing number of symptoms and warning signs that can come with a migraine.

A migraine is when your headache is being caused by neurological problems.

Stigma #4: We don’t want to be isolated.

My lifestyle has dramatically been altered as I transitioned from a few migraine days a month to being chronic.

There are a lot of things I can no longer do. I’m not up to going out to a concert. I don’t wake up refreshed, ready to hit the gym or grab a coffee with a friend. My inability to do so many of the things I once did regularly doesn’t serve as the reason I find myself alone.

Yes, I’d much rather nap most days than venture out, but even if I wanted to venture out, I’d often still be alone.

Friends and family I used to have at an arm’s length aren’t around anymore.
People see my inability to commit 100 percent to plans as me saying sure, but I’m going to cancel on you. I never want to cancel. I’ve gotten so used to having to cancel last minute because I’m hit with such severe pain that I can’t go, that I’ve started disclosing that hey, I want to go, this sounds like fun, but there’s a chance I won’t be able to. So people stop asking.

I can still grab coffee, just not first thing in the morning.

I can still go see a movie, I just have to go when I’m not in pain. There are times when I’m not in pain.

I can still hang out with friends. I can still have fun. I just don’t want to do so in a bar. I have Netflix and Hulu, come over watch a movie. Come over, let’s cook a fun meal. Come over and we can play a board game or talk about life or sit on the porch and enjoy the weather.

But people don’t reach out, and it’s difficult trying to connect with people who treat me like I’m a burden.

Stigma #5: People are already talking about it.

The real problem. No one talks about it. Television shows don’t portray it. There is no lead in a show that lives with chronic migraine. The media ignores this segment of the population.

There are over 38 million people with migraine in the US alone.

I fall into the 2-3 million Americans who have chronic migraine. If 13 percent of the population has such a debilitating condition, why aren’t we talking about it? Why aren’t we fighting for more money to go towards better research? Why aren’t we providing incentives for medical professionals to choose a career as a headache specialist?

As of 2015, there were only 416 registered headache specialists in the US. That’s one doctor for 91,000 migraine patients. But they likely don’t see that many patients because 1) the specialists aren’t located in close enough proximity to most patients and 2) many migraine patients can’t afford to see specialists.

We need to acknowledge that although women make up the vast majority, there are still millions of men affected as well.

We need to talk about it. June is Migraine and Headache Awareness Month.

If we talk about it, perhaps our bosses might start seeing migraine as more than an “excuse to be lazy” (that’s another stigma, but I won’t get into that). Our bosses will recognize it for what it is. A disability. A chronic condition. By law, they are required to provide reasonable accommodations. For me, all I ever ask for is a level of understanding. I will keep them in the loop. I will work and do my best until I recognize that my need for accommodations is larger than what is acceptable. Then I won’t work. I won’t put the company in jeopardy. But I will need to use my sick days. I may even need a few extra sick days. Some mornings I may need to come in a little later.

If we talk about it.

Maybe our friends and families will start to understand. Maybe we won’t be isolated. There’s so much information out there in the forms of blogs and collaborative communities. We don’t have enough scientific research yet. This condition is extremely misunderstood. But there are plenty of compassionate individuals who can understand this condition for what we do know about it. For our individual experiences. Our individual needs.

Breaking the stigma is removing the stigma.

So for June, I won’t just talk about it. I’m going to yell. I’m going to shout. Our voices need to be heard. They need to be exposed.

Getty Image by marzacz

Originally published: June 13, 2018
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