Yes, you! I know the concept may be a little daunting to some folks. When I first heard of advocacy it scared me quite a bit. But that was before I learned, that there is so much more to advocacy, than the political side. Such as Headache on the Hill, which is a wonderful way to advocate for our cause. But not something that every person with migraine is able to do. Lets talk about some of the other ways we can advocate for migraine disease. 

  1. The most important way of advocating, is for ourselves. We need to be responsible for learning as much as we can, about our disease. I’ve had chronic migraine for seventeen years and until I hooked up with Teri Robert* again, on Health Central’s Migraine Management site. Did I realize how little I knew about migraine. I am happy to say that after three years of reading Teri’s many articles, on the various subjects dealing with migraine. I am no longer in the dark. While I can’t state that I know everything there is about migraine.  I can now confidently advocate for myself in all areas of my healthcare, especially Migraine. Migraine can take so much from us, but being an active part of your treatment plan gives you back some of that control. I would interject here, if your headache doctor, be they a specialist or a Neurologist with a subspecialty in headache medicine, is not willing to work WITH you when formulating your treatment plan, it’s time for a new doctor.

    “A Migraine attack is a Migraine attack, is a Migraine attack, right? Wrong. There are several types of Migraine and even some subtypes of those. It’s important to know which type or types of Migraine we have because which treatments are appropriate and which symptoms, if any, are reason to get medical care can differ according to which type of Migraine we have.”

    From Teri’s article “Exploring and Understanding the Types of Migraine”

    https://www.healthcentral.com/article/exploring-and-understanding-the-types-of-migraine?ic=edit

    Such articles likes this explain the differences between the many types of migraine and is extremely important for your doctor to know all of your symptoms, so you are treated properly. Before every doctors appointment and especially before, a visit with a new doctor. Type up a list of your concerns, don’t make them a mile long, focus on the issues that are most important. Take two copies, one for the doctor and one for you, it works great to have your own copy, to make notes on, it’s very easy to forget everything talked about. This was the article that I sent to a friend, we visited with while on our trip to Florida. It was great to see old friends! She was describing to me the flashing type lights, she would get then followed by a horrible headache, nausea and sensitivity to light. This sounded like Migraine with Aura to me. While talking further with her and her Aunt, they began to realize that several family members, also had migraines.
    I sent her the above article, as well as “How to Find a Migraine Specialist” and “Migraine with Aura”. The way Health Central has revamped its site, it is very easy to find articles written by Teri, to share with anyone you think is in need of advice. This is not meant to take the place of them going to the doctor, but arming them with information. What I did here was, advocacy! It wasn’t scary at all, in fact it made me feel very good about myself. I helped a fellow tribe member!

  2. I opened my Twitter account in September of 2015, that was a really big step for me. My profile states: Chronic Migraine, Fibro, Melanoma Survivor, Dep/Anx, Avid reader, cat lover, flower gardening. Share inspiration, hope, humor, migraine facts, beauty in all forms. I now have 541 followers, which isn’t all that grand, on the large-scale of things. But it makes me extremely happy when people tell me, that my tweet that day made them smile, or laugh out loud! Laughter really is the best medicine! If I can make that happen, I’ve met my goal! I’ve also made some really nice friends on Twitter, our tribe is everywhere! What I accomplish on Twitter is advocacy, sharing inspiration, hope, migraine facts, humor and the many forms of beauty, that surround us, but we don’t take the time to see them. 
  3. Another way of advocating is to, share your comfort measures with other of your migraine tribe. Don’t assume that they know all of these, just because they’ve had migraine for several years. You know the saying about assuming!

    I like Teri’s article “How to Make Migraine Aromatherapy Roll-ons” 

    “Although aromatherapy can’t abort a Migraine attack, it can be helpful for symptomatic relief and comfort. Roll-ons are commercially available, but making them ourselves allows us to customize them, and they’re less expensive. Here are instructions for making your own customized Migraine aromatherapy roll-ons.”

    http://www.healthcentral.com/slideshow/how-to-make-migraine-aromatherapy-roll-ons?ic=edit#slide=1

    Some more of my comfort measures are, Peppermint Tea for nausea, Migraine Hat(ice pack), hand-held massager that helps me reach sore muscles in my neck and shoulders, a cool, quite, dark space to got to, when a bad migraine hits. And Peppermint tea. My Kindle Fire, the light setting turned down, I also use a different background color, than white. I can always turn the blue shade on to make it more comfortable on my eyes. And peppermint tea. When I’m really nausea or my stomach is just out of whack, I keep protein drinks in the fridge, so I at least get some nourishment. And peppermint tea! Alright you got the message that I love Peppermint tea. I also put my biofeedback to use during these times and have just started using a Mindfulness Meditation app called, Headspace. I am currently on day 10, I am finding this to be very useful. As I have never learned meditation before, this is another example of advocating for myself. Plus the narrator has a sexy British accent, not at all hard to listen to! 

  4. When you offer comfort, encouragement and support online, whether it be on Facebook or in a Migraine Support Group, that is advocacy. Every time you donate to a migraine cause, such as Runnin’ For Research or Miles for Migraine. That is also advocacy. When you send a migraine sister a little something in the mail, because they’re going through a rough time. You guessed it, that is advocacy! You may have been doing several of these things, not even realizing you were being an advocate. 
  5. Starting this blog is a form of advocacy, it allows me to reach out to others with migraines. Though I usually do it in an upbeat and sometimes funny way, because that is how I live with migraine. With hope and humor!
  6. Being an advocate also allows hope to bloom, much like a flower, the more you advocate for migraine, the more hope blooms, petal by beautiful petal! 

 

“I know you can’t live on hope alone; but without hope, life is not worth living. So you, and you and you: you got to give them hope; you got to give them hope.”
― Harvey Milk 

Live with hope,
Roni

 

*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+.