Chronic Migraine – Misfits?

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.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (18)
  • Still Smiling
    5 years ago

    Amazing Video; I just watched this and will definitely be sharing – you so deftly sum up what most of us go through. I too, like many others, had tears streaming down my face by the end of the video. My thoughts and prayers are currently with Luke and Melissa’s family and to all those others who have lost their battle with migraine — or who are constantly fighting the good fight.

    We may be losing the battle, but the war is ours for the taking…

  • Ellen Schnakenberg author
    5 years ago

    Thank you so much for taking the time to comment. So much work went into it by so many people. We have lost I believe 4 since we started actually putting the video together. This is too many. I have to believe that we’re winning the war, slowly but surely.

  • geishagirl
    6 years ago

    I wept as I watched this video and saw myself in so many of those faces. But it helps to know that I am NOT alone. I have posted the video on my facebook page along with a personal message explaining my situation to those who don’t know. All I can say is thank you and please continue your work. You are right: WE NEED A MIRACLE.

  • Ellen Schnakenberg author
    6 years ago

    Thank you geishagirl. Your comment means so much. When you share this, you hopefully create awareness we desperately need to make changes in all our lives. Lately it has been super hard feeling like we’re not all banging our heads on a proverbial brick wall. We need everybody to do their part and make sure others understand what Migraine truly is…

    One person + one + one eventually equals a million.

  • Janet
    6 years ago

    I cried viewing the video and have passed it along to friends and family hoping this might be the information VISUALLY that might get through…

    I’d like to add my face to the faces of migraine. How can I do this??

    Also..awesome choice of song by Third Day…one of my favorites.

    Blessings
    Janet Jones

  • Ellen Schnakenberg author
    6 years ago

    Hi Janet,

    This video is completed and can’t be changed, but please go ahead and sign up yourself for updates so you’ll be notified of the next project. FYI: We can only use photos you have the right to use (copyright) etc.

  • Janet
    6 years ago

    Ellen..
    Thank you for the information. I would like my friend Michele who I met at the diamond headache clinic in Chicago in December 2004 face, name and story join in with the faces of migraine. Michele lost her family….to migraines and committed suicide 16 months ago. She needs to be remembered in our community .. She was my closest friend in and out of the migraine world. I miss her everyday.

    Blessings,
    Janet

  • Ellen Schnakenberg author
    6 years ago

    Janet, Thank you for your interest in the project. We will be doing more projects, and you can sign up to be notified by signing up for the newsletter on the main site for the projects. Try FacesOfMigraine.com. 🙂

  • melaniebruce
    6 years ago

    Thank you, 36 million times over. Sharing this on Facebook and thinking about getting a workshop together on my campus to share some information with my fellow instructors. The community college where I work has a lot of former military students with TBI and they tend to be migraine sufferers. I am a long-time migraineur as well. You are moving us closer to that miracle and I thank you from the bottom of my heart.
    Melanie

  • Ellen Schnakenberg author
    6 years ago

    Like the Little Engine that could… we just keep trying. Please share it so others will realize that the spectrum of this disease doesn’t stop with an OTC pain pill.

  • body
    6 years ago

    Awesome job, Ellen. I agree with Nancy, hard to find the words to describe. I think the music you chose speaks for a lot of us-“I need a miracle!”–in unison –we need a miracle!

    Thank you,
    Sharron

  • Ellen Schnakenberg author
    6 years ago

    ((((Sharron)))) You taking the time to comment means a lot <3

  • Kim Smith Lawson
    6 years ago

    Beautiful job, Ellen. I cried when I watched it, so sad that others are stuck with this. I’m so proud of the job you’ve done with this. I’m sharing this today on my facebook page… no matter how hard this is. Love and hugs to you, hon, and thank you!

  • Ellen Schnakenberg author
    6 years ago

    Thank you so much Kim. I appreciate it sooooo much. Now we need to figure out a way that we can tell two friends, who tell two of their friends, and so on…!

  • Nancy Harris Bonk moderator
    6 years ago

    Ellen,

    That is simply amazing. I’m finding it difficult to find the right words to describe how incredible this is.

    Thank you
    Nancy

  • Ellen Schnakenberg author
    6 years ago

    kathyhorton-bishop – I appreciate you sharing it. That’s the only way people will realize that this can be so much more than they think. I hope it shows the full spectrum so they can understand.

  • Ellen Schnakenberg author
    6 years ago

    (((((Nancy)))))

  • kathyhorton-bishop
    6 years ago

    wow thanks so much I’m sharing this with anyone and everyone…noone I thought Understood my life…this video is my life …I’ve lost family friends my job etc… due to the toll migraines take on my life I’ve been chronic since 2007…stopped working in 2008…even though my daughters both get migraines they couldn’t take living with me anymore and chose foster care with strangers rather than with their mom after their father lost his battle with cancer….I cry myself to sleep many nights and live now in isolation in a dark cold apartment 1200+ miles from my children.. thank God He found me someone who understands….My new roomate and love of my my life Ross …who cares for me on every day even on the days when I myself feel unloveable….the video gave me goose bumps and brought tears to my eyes …I struggle daily with the migraines ….and fibromyalgia….I’ve had several severe reactions to meds and nothing is working yet …docs are trying to get the insurance to approve botox ..cuz on disability I cannot afford it ….I’m at the mercy of my insurance as far as any treatment goes…. I have not given up hope …and bless the day I found you and migraine .com…..I know more about migraine and it’s triggers than anyone should have to….my whole neurological system is screwy….so what has worked for others has yet to work for me or made me worse…I’m hoping for the day when I get my life back, my family back, my body back…. thank you again for expressing what none of us has been able to express..
    🙂

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