Want more attention to be paid to migraine? Start by sharing your story.

Early in the morning on June first, I was stumbling about a hotel room in Washington, D.C., trying to get dressed and make coffee in the semi-dark as my sister slept in the bed next to me. It was 6:00 AM, and I was getting ready for my first day ever as an advocate on Capitol Hill.

I hadn’t been nervous until that morning, but suddenly I got freaked out. I was going to meet with 4-6 aides of senators and representatives, and I’d only have a few short minutes to explain to them why headache and migraine disease deserve more attention and more funding. I was one of many people asked to go to annual event called Headache on the Hill. Happily, I saw a few online friends there, all of whom were ready to meet with their own policymakers on the Hill. You can read others’ descriptions of Headache on the Hill here and here.

But I’m writing this blog to tell you my impressions. Rather than recap the entire event from an objective perspective, I’m going to do what I love best: tell you how it went from a subjective perspective.

It. Was. Nerve-racking. Yes, it was also fun and meaningful and very important, but it was more difficult than I’d imagined to walk into a congressman or senator’s office, look at those important gold seals on the wall, and then spend maximum ten minutes explaining to the lawmaker (or his/her aide) why more attention needs to be paid to migraine. We had one advantage over a lot of advocates, though: as every person knows someone whose life has been affected by migraine, we knew that we could personally connect to everyone we spoke with. We didn’t fail to leave one of those fancy offices without first hearing about how migraine and/or other headache diseases had had an impact on the lawmakers’ lives. Oftentimes, an aide would mention his girlfriend’s trouble with the disease; others would tell us about how their aunts and mothers suffered terribly. Migraine has a very real impact and it was clear from talking to these folks in Washington that even relatives’ migraine attacks during the politicians’ childhoods had a lasting effect on them.

The only lawmaker who was able to meet us in person (along with an assistant) was Rep. John Lewis of Atlanta, one of the foremost Civil Rights leaders and a modern-day hero. Being able to sit at a table with him, his assistant, and three fellow volunteer advocates was one of the most amazing opportunities of my life. Rep. Lewis gave us his full attention, even when the bells were dinging all around us, indicating that there was a vote on the floor he had to take part in. I’d suspected that meeting with him would be the most stressful appointment of the day, but I couldn’t have been more wrong. He was so cordial, easygoing, and genuinely interested in what we had to say—he didn’t even glance away from our faces as we told our stories that were peppered with bell-ringing and other aides coming in to look for him. It was an honor and a privilege to sit with him for half an hour.

And that brings me to this, a point I am going to make repeatedly on this blog: we need to listen to each other. About everything, sure, but especially about migraine. This is especially true for all of you who have dealt with this disease quietly over the years, for those of you who are in sore need of a support system. Share your story. Write your state and federal representatives and senators. Spend time with fellow migraineurs, and take the time to explain to non-sufferers what it is like to deal with this disease.

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 (8)
  • Susan Cleveland
    8 years ago

    after writing my congressman and hitting the “send” button, this is the message I received. Your submission has triggered the spam filter and will not be accepted.

  • Susan Cleveland
    8 years ago

    I just had to be persistent. I tried another avenue and SUCCESS! Now let’s see if I am heard.

  • Angela Reisinger
    8 years ago

    I have also decided that I cannot hold down a full time job my headaches are so severe and chronic now. I have found out that headaches are not considered a disability. Whoever put this in the books surely never had to perform a meaningful task while having chronic painful headaches!
    ps. I would much rather be working.

  • Karen Walker Hilton
    8 years ago

    Angela – it is a very long road, the disability pursuit, but it is absolutely possible. My chronic migraines began in June 2006. By October of that year I had to leave a 20 year profession that I loved because I was home in bed more than I was there. I was eligible for long term insurance income thru my employer, however, part of the condition of receiving that was applying for Social Security Disability. It took all I could muster to apply for that. I felt as if by applying I was giving in. I didn’t feel ‘disabled’ in my book. But I did because I needed that income from that long term insurance in order to live and pay my bills. That was in October of 2006. My case went all the way to the hearing process which was held January of 2011. I was found by the Hearing Judge to Fully Disabled. It was a very bittersweet moment for me. I’m still young enough to work and contribute to society, which I would much rather be doing. However, I can’t. So while SS does not necessarily spell out chronic migraine as a disability, it is possible to pursue it. Speak to an attorney who specializes in SSD cases; continue going to the doctors (once I lost my medical insurance, I had to pay out of pocket or work out payment arrangements). Don’t lose hope. I’m sorry you had to stop working. I really do know and understand that you would rather be working. Best of luck to you.

  • Susan Gauvin
    8 years ago

    I spent my life with migraines. I saw family Dr, emergency, clinics, allergist, gynecologist, actually never felt it was not responded to as a serious problem, and did not acknowledge it myself as serious…even though it was effecting my life in a serious way: example I dropped out of college thinking in part I just couldn’t do it. Not until now I am in my 40’s I finally met a Dr. who was a friend of a friend who ran to a pharmacy to get meds for me as I was in the middle of an attack and told me to take the full dosage of Ibuprophen to counter it did I ever feel that they were taken seriously. I think it needs to be addressed at the Dr’s office as something that needs to be taken seriously and not brushed off as another person that gets unknown headaches.

  • Angela Reisinger
    8 years ago

    I can relate to this.. seeing all types of doctors, never being taken seriously for whatever reason and never living my dreams. Migrains always holding me back.

  • Ellen Schnakenberg
    8 years ago

    Janet, it was such a pleasure knowing you would be there too. Your voice is vital. Every voice is vital. If we don’t stand up for ourselves – – – who will?

  • Mary Bell Price-Hankins
    8 years ago

    After my husband took early retirement last year and we realized that he would not get insurance benefits, we were forced to go out and buy our own policy. Having been a migraine sufferer since my teens the insurance company that we went with excluded migraine, headaches and anything to do with my head. Since no one else would take me and I was not going from a group to group policy I had no choice. Now I not only pay huge premiums for substandard insurance but pay full price each month for all my migraine meds.

  • Poll