How does one becomes a migraine patient advocate? The first time someone asked me that question, I fumbled around for an answer — mostly because I really hadn’t thought about it.
There are some classes and training programs for advocates, but I’ve not completed any of them. They’re meant for people who are going to work as patient advocates in hospitals, foundations, and other places to help patients with issues such as insurance coverage, access to care, employment problems, medical debt, and other issues related to their illness. Anyone who’s interested in doing that type of advocacy work would do well to check out the Patient Advocate Foundation.
The advocacy work I do evolved from my debilitating migraines and failed health care. I’d been to neurologist after neurologist within 100 miles of home, and I was still in bed with a migraine – that nothing helped – five or six days a week. I remembered my father saying, “If you don’t stand up for yourself, you can’t expect anyone else to.” I thought about that and the situation with my migraines, and went from being frustrated to being really ticked off. That’s when I hit the Internet looking for help, and I soon found that I was far from alone in my situation. When an opportunity to write for a web site and share what I was learning came along, I took it. It didn’t occur to me then, but now I can see that as my first step into being a patient advocate.
As I’ve looked around the online migraine community and talked with other migraineurs, I’ve come to a conclusion.
Think about it. Have you …
- Shared a link to an informative article about migraine?
- Posted about migraine on Facebook?
- Tweeted or reTweeted about Migraine?
- Explained migraine to friends or family members to help them understand the disease?
- Reached out to another migraineur to offer them comfort and support?
Everything listed above is part of being an advocate. There’s a huge need for advocacy and raising awareness, and every tiny effort adds up to significant efforts that can affect change in raising public awareness and decreasing social stigma.
You may already be doing more as an advocate than you realize, and there are many small things we can do --even those of us who are debilitated by migraines. Chances are high that all of us who are able to read online articles can participate in advocacy efforts.
Below are some additional advocacy activities that are easy, yet rewarding:* ** Wear a lot of purple - frequently.** When people ask, you can tell them it’s the awareness color for migraine and other headache disorders, then ask them if they’d like to know more about migraine. You can then share what you know or send them here and to other web sites you like and trust.
- Keep migraine information at hand. Read our article, Teaching Others About Migraine - A Letter to Use, then print the letter and keep a couple of copies with you to share with people who need information.
- Follow other advocates. As you notice other people who are doing advocacy and awareness work, follow them on their blogs, Facebook, Twitter, Instagram, and other social media outlets. Once you build yourself a network of good sources, you’ll be able to pass on the information you get from them.
- Reach out to others. A kind word and good wishes from others can mean the world to someone suffering with a migraine or someone who’s having trouble with their migraine management. The can be done in person, and it can be extended to the online migraine community through social media.
- Check out the American Headache and Migraine Association (AHMA). AHMA is the patient arm of the American Headache Society. It’s a nonprofit patient-driven, patient-focused organization. One reason it was founded was in response to NIH comments about the lack of a strong patient organization to represent patients with all headache disorders. AHMA is a member of the Alliance for Headache Disorders Advocacy, the organization that sponsors the annual Headache on the Hill event to lobby Congress about the needs of migraine and headache patients.
- Be brave. Be open about migraine. Let’s take Facebook as an example of what I mean here. Some people are very open on Facebook; others are very reserved. But even some people who are very open never post about their migraines. It’s totally understandable when people simply don’t want to post about health issues, but some people don’t post about their migraines because of the stigma associated with migraine. I totally understand, but I hope everyone will consider being open about having migraines. Migraine is a disease, every bit as much as diabetes, thyroid disease, and many other health issues are diseases. It’s not a “same on us” situation; it’s a “shame on you” situation for those who perpetuate the stigma. The more visible we and our disease become, the harder it will be to stigmatize it and us.
Have you been a migraine patient advocate without realizing it? Would you like to increase your advocacy activities? I hope the suggestions above are helpful to you. Please feel free to comment below or contact me if I can be of assistance.
Do you have suggestions to add? If so, please click on the comment button below, and share with us.
Teri Robert is a leading patient educator and advocate and the author of Living Well with Migraine Disease and Headaches. A co-founder of the Alliance for Headache Disorders Advocacy and the American Headache and Migraine Association, she received the National Headache Foundation’s Patient Partners Award and a Distinguished Service Award from the American Headache Society. Teri can be found on her website, and blog, Facebook, Twitter, StumbleUpon, Pinterest, LinkedIn, and Google+.