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Breaking the Stigma

I spend all night tossing and turning, hoping that 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 Number 1: Chronically Ill means abnormal.

Yes, it is true. Many times we refer to people without disabilities or individuals who aren’t suffering with 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 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%. It never will be.

Stigma Number 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 that may never find that sweet spot.

But the thing is. Being on 5 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, don’t to me equal a cure.

It’s constant treatment that is working. But stop that treatment? No one would. No one wants to go back to the constant pain.

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

Stigma Number 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.

A headache is a stepping stone to a migraine. 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 that 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 come with a migraine.

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

Stigma Number 4: We isolate ourselves.

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, don’t serve as the reason I find myself alone.

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

Friends and family that I used to have at an arms length, aren’t around anymore. Yes, I moved halfway across the country from some of my best friends, but that isn’t the point.

The friends and family I do have here blame me for my condition. The don’t want to deal with me. I am a burden. I have been told I am the burden. People see my inability to commit 100% 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 making plans.

I moved into my own place to stop being a burden. To control the space around me. To have a sanctuary where I wouldn’t affect those around me when I need quiet or dark.

So people stop reaching out. People don’t check in. I’m of no use to anyone, with the exception of my mom, because I don’t bring anything to the table in their eyes.

Sure, I should just reach out to them, right? Wrong. People are around when I’m in dire need, like I need to go to the ER. But other than that, not a soul in sight.

People don’t want to deal with my condition, even if I don’t ask them to take any part in it, just knowing that I’ve got it, makes people leave me alone.

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 I’ve given up on trying to connect with people who treat me like a burden.

Stigma Number 5: No one is talking about it.

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

There are over 38 million migraine sufferers in the US alone.

I fall into the 2-3 million American’s that suffer from chronic migraine.

If 13% of the population suffers from 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 don’t see that many patients because 1) the specialists aren’t located in close enough proximity to most sufferers and 2) migraine sufferers often can’t afford to see specialists.

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

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

If we talk about it, our bosses will 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 their in the forms of blogs and collaborative communities. We don’t have the 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.

A.

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