Chronic Migraine – Misfits?
Posted by Ellen—June 29th, 2013

Migrane Awareness Month

When you have Migraine every day, it’s easy to feel like you don’t belong. Let’s face it…

  • I rarely leave my home, even to go outdoors, due to illness and light sensitivity.
  • I rarely see people other than my family or the people living on our farm.
  • I can’t be depended on for anything, unless it’s *right now* and I’m feeling good.
  • My life revolves around taking my meds and fitting eating and everything else in-between.
  • Not being able to hold down a normal job, like normal people, tends to make me feel like a loser.
  • Nobody I know truly understands how hard I struggle every day just to survive, let alone thrive.

Okay, I know many of you reading this will have already realized that we have some things in common – yes? This means… we are NOT ALONE.

To prove this point, I have a surprise for you later in this post…

Reader favoriteWe may be misfits in comparison to the outside world simply because we don’t fit into the typical mold.  But, let’s face it – there are 37 MILLION of us in this country alone. I’d say that puts us in pretty good company!

The general public thinks they know all about Migraine, and they feel free to judge us according to the misinformation they have been fed for generations.  This results in terrible stigma and repression for those patients without anyone else around them who understands their lives.  It affects our ability to get research done on Migraine, and that in turn affects whether or not we find any new treatments. Patients learn to keep quiet and to be stoic in the face of pain at a level most people have never even considered. We smile because we feel like that is the only way to get through the day.

All most of us want is for those that love us to understand us.

The fact remains – they cannot understand our physical experience, but that doesn’t mean that they don’t love and care for us.

The stigma of Migraine is so prevalent, that even me – an advocate and educator – doesn’t talk about Migraine with those that know me, unless they ask me. Only a small handful of people in my community where I’ve lived nearly 18 years, has any idea why I stay at home, or what I do all day long on the computer. I’ve spent the last 10 years or so being much more comfortable talking to people anonymously than with my own name. I have avoided using my own name because this makes me a target for those that want to cause me harm.

This just shouldn’t be.

I felt there must be something I could do. Something. So slowly, an idea was formed and I took action. Knowing there were so many other patients who wanted the world to know the facts of Migraine yet didn’t want to identify themselves as Migraineurs, led me to create a project now known as The Faces of Migraine project.

After a year’s work, we’ve networked with a hundred or so other patients to create a very moving video that is meant for people who don’t have Migraine, or who don’t understand the full spectrum of this disease. The message is that Migraine is costly, disabling, and so prevalent that – - you can’t tell who has Migraine and who doesn’t, or who is disabled and who isn’t. At the same time, it shows the full spectrum of what this disease does to those who live with it.

It is our hope that this video is viewed by people who don’t understand, in hopes that they will be shocked into learning more than they thought possible about Migraines.

Here is our attempt. I pray you not only like it, but share it in your other communities, with family and friends, and with those who need to learn what living with Migraine is really all about…

This post was a part of the June 2013 Migraine and Headache Awareness Month Blog Challenge #29.

Learn more about the MHAM Blog Challenge and other MHAM events by visiting:

2013 Migraine & Headache Awareness Month Information Page

June, Migraine and Headache Awareness Month, is dedicated to Unmasking the Mystery of Chronic Headache Disorders. The Migraine and Headache Awareness Month Blog Challenge is issued by FightingHeadacheDisorders.com.

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About Ellen

Migraine.com’s patient educator/advocate, writer and community leader Ellen, is a lifelong Migraineur. She has been chronic since the mid 1990′s.

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