What Would You Say on Capitol Hill?

The burden of Migraine on society is huge. The burden of Migraine on patients and those they interact with is also profound. Now imagine you’re in Washington DC knocking on the door of a legislator who doesn’t know anything about Migraine Disease other than it’s a “headache”… As only one of some 60 million Migraineurs who will experience an attack this year in the US, what would you tell them to convince them more funding is needed for Migraine research?

Headache on the Hill is an initiative of the Alliance for Headache Disorders Advocacy (AHDA). This year it is being held just prior to the 53rd annual scientific meeting of the American Headache Society which is occurring during the first few days of June — aka National Migraine Awareness Month.

This is the first year I will have the opportunity to attend Headache on the Hill, and I am SO excited! There are many, many things we can actively do to help with awareness activities in our everyday life, and while I make it a point to put my money where my mouth is — I actively write my congresspersons and have met with state legislators in the past — I cannot deny the awesome responsibility I’m feeling as I write this.

In a few days I’ll be standing at our Nation’s Capitol, talking face to face with the people who hold the future of Migraine research in the palms of their hands. In doing so, they hold my future and the future of my children right along with it. They hold your future too, as well as the future of every person who participates on our website here. This is my chance to ACTUALLY DO something that makes a tangible difference for those 60 million people.

60 million.

My knees are shaking…

While I am excited, I am also concerned. I want to know what you would want to say if you had 30 seconds in my body – to use my voice and this fabulous opportunity to make a real difference in the lives of us all.

Would you try to make them understand Migraine Disease? How?

Would you pump your fist and get riled up at the staggering statistics of Migraine disability?

Maybe you would grasp their hand an extra second and say something equally as profound as our disease?

Would you tell them a story to illustrate what Migraine Disease and its impact on society?

What would you say… if you were me?

I may not have the opportunity to use your words — I don’t know what these visits will bring, and this will be my first Headache on the Hill adventure — but let’s generate some conversation about our disease and where our priorities are.

Here’s your chance — you’ve got 30 seconds… and the clock is ticking…

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 (13)
  • Catherine Charrett-Dykes
    7 years ago

    there is not one aspect of my life that hasn’t been effected because of chronic migraine….the pain can be agonizing and at times seems endless….thank you for taking time to go before congress I hope they listen, really listen! 1

  • Beth
    8 years ago

    You need visuals; posters, migraine art, video, testimonials from children. You need a presentation to show why it’s worthy to help people migraines.

  • Marisol Carter
    8 years ago

    Ellen first and foremost thank you for pioneering for all of us that suffer from this horrible affliction. Your courage is astounding! Do know that even though I am not there with you or the rest of our fellow sufferer’s we stand united with you 100% and we respect your guts and dedication to helping us all. May this help your nerves so that you can convey the urgency of our plight calmly so as to be heard and understood. Now what to say in 30 seconds…my first thought was something I read here on this site. Do you and your specialist disagree on the severity of your Migraine Disease? Under “some tips” some of them can be tailored of course not to a doctor but the panel you will be facing using language that speaks facts! The impact this disease has on 60 million people. Funding for research, and clinical trials, Accessibility to medications that are so expensive that many cannot afford or insurance won’t cover like in so many cases..I’m not as knowledgeable or probably as smart as you about this..just bouncing ideas of what I have learned from YOU! Speaking for myself this disease has disabled me to the point that I am severely depressed have lost my zest for life and robbed me of the joy of being a wife, mother, grandmother, ect. Being a burden to your family and society is a painful place to be…P.S I wrote Merck & Co about not being able to afford Maxalt and insurance not covering it (only thing to seem to be working) I was offered 3 free tablets with a script..maybe I didn’t use the language that speaks facts? LOL! God Bless..I’ll be waiting for you when you get back..be safe.

  • Barbetta Reedy
    8 years ago

    How I explained it to someone when getting disablity was this she said that she had a headache and felt drained, I told her to mutiply that by 10 and you have what a migraine feels like. How it effects families when there is an event and you are the one that sits it out because of this so call headache, that you can’t be at work all the time or if you are at work you are in the bathroom throwing up that you use your vacation days for your headaches because you have used all your sick days up and you still lose time at work. You get passed over at work because your attendance has fallen. Is there any job out there that will let you lay down for at least 4 hours then go back to work?

  • Marjorie Lane
    8 years ago

    I would take pictures of auras and what migraine disease looks like in the brain. I would also take my work history for the past 2 years with the missed days because of migraines and how many missed family events because of migraines. Things like that. How many missed meals because I can’t eat from the pain. The doctor bills and the list medications that I have tried. I might put that in a quick spread sheet. Show them what affect migraine disease has on My Life and the lives of my family.

  • Pamela Curtis
    8 years ago

    Migraines are often present with other diseases that make a lot of the non-narcotics non-options. But there seems to be a growing reluctance to allow narcotic pain clinics and doctors to operate. This isn’t helping patients and only makes a black market so much more profitable. I don’t know what the solution is, but doctors and patients needs to have a non-hostile environment in which to work. Please help.

  • Scott Norris
    8 years ago

    A buunch of capital marxist screwballs.

  • Cristy Parisher Wade
    8 years ago

    p.s. most of my appointments with aides lasted about 15-20 minutes, so I had time to describe the disease (which no one has heard of so it was necessary), tell how it affects my family and other famlies (bringing examples from their district when I could), and go over the facts and figures. Good luck and have fun!

  • Cristy Parisher Wade
    8 years ago

    I have “marched on the hill” in support of funding for tuberous sclerosis research. A personal story is a nice touch as they will want to know a little bit about how it affects you personally. But, this is DC. It’s about money. What does headache disability cost this country in lost productivity? They are also interested in hearing about issues that affect our military servicepeople, and a large percentage of them are returning from tours with headache disorders. Stun them with the numbers…and leave a packet with facts and figures if you can.

  • Londa Taylor-Craven
    8 years ago

    Good for you, people who do not suffer like we do, do not understand our pain. Just because you cannot see it, does not mean we do not have it. Let me know who it goes please.

  • Tracy Brooks
    8 years ago

    30 seconds is not enough time to even touch on a disease as profound as migraine disease nor is it enough time to begin to tell them all of the issues and points that need to be made! I am leaning on your expertise to cover this subject….My favorite saying to describe myself and many others is “the duck on the water seems calm and serene but what you don’t see are his legs struggling underneath the water to keep himself afloat”!

  • Tanya Morsbach
    8 years ago

    I ythink they need to understand whta we go through and that it is a disability. I applied for disability and they denied me three times saying this problem is not so bad. they don’t have them they don’t understand.

  • Debra Nemeth
    8 years ago

    HELP! Dear God HELP! I have gone from a productive citizen to incapacitated from these “headaches”. I raised a family, served my country in the United States Army, Graduated from school and am a Registered Nurse. I am 49 years old. My husband is retired due to medical problems. He does not get social security or disability….He never applied, we had no need to apply! I was capable of working full time and LOVED my job! The migraines began in my mid-30’s….and in the past 18 months (?) have become so severe, so frequent…I am now about to be fired. An employer cannot depend on me showing up for work. I CANNOT DEPEND ON MYSELF. I don’t know when/if I am going to be confined to a darkened, quiet room from one day to the next. I have worked with ‘headaches’. MIGRAINES ARE RULING MY LIFE! I am a nurse! I cannot take care of patients….when I can’t even take care of myself. Please…I am applying for Social Security Disability….My diagnosis isn’t on their list. I have been out of work now for 5 months. Trying different medications. Everyone of them “takes time” to see if they help. I had an initial series of Botox injections (approved by the FDA 10/2010) in March. I had to go through all the steps to get there (this medication – nope – this medication..etc). I have to wait another 90 days (3 months) from the initial injections and then go through the insurance authorization procedures and hopefully I will be able to get the second series. I realize you are not able to SEE what I am FEELING….but if you could…if only you could.

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