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Migraine Activism: How Do We Make People Care About Migraine?

“Yoda is wrong. There is only try.” I posted this on my personal Facebook page with a link to my Migraine.com piece in the hope that some of my Star Wars-obsessed friends would be intrigued enough to read the post. I want people to understand that not everyone is healthy and limited by their own perceptions. That for some people, including me, a person most of my Facebook friends care about, trying really is all there is.

The next, unrelated status update in my Facebook feed read, “Are you avoiding talking about race because it makes you uncomfortable or because you just don’t care?” “Huh,” I thought, “I don’t talk about race because I don’t have the mental or emotional energy to do so.” Because I don’t face racism on a day-to-day basis and instead spend my life trying to manage a debilitating chronic illness, the topic doesn’t come up for me much. On the rare occasion I’m having an intellectual debate, race may be mentioned, but it isn’t part of my daily life (nor are intellectual debates these days).

Answered in the frame of my friend’s binary question, I don’t talk about race because I just don’t care. That is so not true.

Everyone has a “cause” they want other people care about, whether it is race, homophobia, autism, or migraine. Yet, every “target” of a movement or campaign has a finite amount of energy and attention. We care most about what has the greatest impact on our own lives. This isn’t selfish or uncompassionate, but a matter of allotting our limited resources to cope with this incredibly difficult task called life.

I want nothing more than for people to understand how severe migraine can be and the emotional and physical toll it can take. I want this not only for patients and their loved ones, but for society as a whole. My friend probably has similarly ambitious desires related to race. Yet, instead of energizing me to action, her comment left me feeling guilty because my daily struggle keeps me from pursing other important problems.

We can’t guilt people into action, nor can we force other people to take up the fight for an issue that doesn’t impact their daily lives. How, then, do we get non-migraineurs to care? This is an issue I discussed many times at the American Headache Society symposium in November and every conversation raised more questions than solutions. I’m working on a list of ideas, which I will share soon.

In the meantime, I want to hear from you: What do you do to help non-migrainuers understand the potential severity and debility of this illness? What other things could be done, whether by you, patients and their families, advocates, or headache specialists? How do we make people care about migraine?

11 Responses to Migraine Activism: How Do We Make People Care About Migraine?

  1. Timothy Bauer says:

    Kerrie:

    From my personal experience it is “very very” difficult to get
    non-migraneurs to understand what someone is going thru.
    In fact it may not be possible unless other person is very
    empathic/or lives with a migraineur.

    A couple of reasons believe it is so-but am sure missing some
    points.

    1. Migraines-many/most persons have never had one-so it
    very very hard to relate to the sufferer.

    2. People perceive that migraines are just headaches-or a
    bad headache. As we know=it can go way beyond a bad
    headache.

    3. Until fairly recently-persons (especially women) who had
    migraines were not considered seriously sick. Some
    persons labeled it a “womans disease”-or some mental
    weakness. Hard to believe-but yes this was not that long
    ago.

    4. Migraineurs suffer from a condition that is not always
    obvious to the public. When a person is in a wheelchair-
    their condition is obvious. But if you talk with a friend-
    colleague about a migraine-especially when not going
    thru the condition at the moment. It is not obvious to
    the other person that you are sick.

    5.Have found many persons just do not want to learn
    anything about your condition (and this can be persons
    who are very close to you.) Some of the reasons for this
    are comments on 1-4 above.

    6. Many persons give me an idea for a “cure”-like one
    change will stop the migraines. They have best of in-
    tentions-but just can’t relate. So they really dont
    know what your are going thru.

    Kerrie-I think remember how you have written about Uncle(s)
    who did not take your condition seriously. So I know
    you know how persons just can’t/won’t relate to the
    condition.

    Thanks for what you do Kerrie-

    Timothy from Reno

    • I agree with all your points, Timothy. There are plenty of people unwilling to relate, but lots who are. Even if someone can’t fully understand what a migraine is like, they can see that being in one totally changes a person they care about. It takes energy to be willing to educate the world, which not a lot of chronic migraineurs have, so I get it if the fight’s just not worth it. But we can’t expect the stigma of migraine to change if migraineurs keep their experience shrouded in silence.

  2. Nilofer says:

    I agree with Timothy on every point. It just isn’t possible for someone to understand something that they haven’t themselves experienced. My mother, bless her heart, has witnessed my migraines for over two decades. She has seen my calendars riddles with notes, trying to track triggers. After finally discovering gluten as a potent trigger and subsequently minimizing the number of migraine days, I showed my mother the improvement on my calendars and showed her the research articles. Her first inclination was, “maybe you have grown out of them or other things have changed”. Matricide crossed my mind but then I took a few breaths and just reminded myself that my mom is reactionary and non-scientific and most of all, a non-migraineur. She did have frequent headaches when she was younger but a nap or a couple of aspirin would always take them away. She is coming around though… but not until after Easter where nearly every dish contained gluten and I refused to eat even the lamb dish since there was flour in it. “You can’t eat even a little bit of flour?” she asked, well, my response was “I don’t know the absolute, lowest threshold but I knew that 1/2 teaspoon of couscous had done me in recently.”

    • Thanks for sharing, Nilofer. It definitely can take a lot of work to convince people! Still, I have lots of people in my life who are tremendously understanding even without having migraine. Not everyone is, but most people are. There are people who are willing to consider the experiences of others even if they can’t know what they’re really like and others who won’t. I’m not sure what the difference is or why I happen to be so fortunate.

  3. Timothy Bauer says:

    To Nilofer:

    Your comments/insight ring so true. Have similiar type
    stories. Have been amazed how little friends, even close
    friends can relate to a migaineur. Your comments were
    right on-” It just isn’t possible for someone to understand something that they haven’t themselves experienced.”

    Peace,
    Timothy Bauer from Reno, Nevada

  4. James says:

    Your use of the term “binary question” is brilliant. That’s my new favourite term. ;)

    You’re right – people care about what they care about – usually something close to them. That’s human nature. However, it does help when people are aware of the reality, seriousness, and relative impact of migraine.

    For example, it’s “real” – not an imaginary or unimportant feeling. It’s serious – does real damage to people. And relative impact – it’s one of the more serious diseases in various ways (ie economic impact and disability).

    You can’t force that information on people, but if it’s there when they’re ready to hear it, it can make a lasting impact.

  5. Nilofer says:

    Maybe discussing the trigeminal nerve would be relatable? Most people know what toothaches and earaches feel like and I believe that these both involve the trigeminal nerve. Migraines invoke different sensations but there is some crossover.

  6. Beth says:

    To Nilofer: Your mother’s comment struck a nerve with me. I’m 48 years old and have had frequent, severe migraines since around the age of 12. If I had a dollar for every time someone has said, “You’ll grow out of them,” or “They’ll go away after you go through ‘the change,’” in regard to the migraines, I’d have a nice little nest egg right now! For a long time the migraines worsened as I got older. It’s not so much that there’s been any great improvement over the years; it’s more that I’ve learned how to cope better along the way (for the most part). I haven’t reached menopause yet, so whether the migraines will magically disappear remains to be seen. However, I’m not holding my breath.

  7. Beth says:

    People outside my immediate family and close friends have rarely seen me in the midst of a full-blown migraine because I do my best to stay at home where it’s quiet and all my anti-migraine tools (eye mask, heat packs, ice packs, TheraCane, ginger, meds) are handy.

    There have been times when I thought a migraine wasn’t going to be “that bad,” or that meds were going to control it and went to a church function only to have the pain and nausea hit me full force. Most of those who had expressed cavalier attitudes or skepticism toward invisible chronic illness changed their minds after seeing me obviously in great pain, my face grayish-green, and in need of a ride home when my house is less than a block away. Later, quite a few of these people asked me or my family if migraine is always so bad, how long it lasts, how often it happens, if there’s anything I can take, etc.

    For the last several years I’ve been trying to be more open with others about being in pain–whether from migraine or fibromyalgia–rather than hiding behind a mask. This is not to say that I give TMI to every Tom, Dick, and Harry who asks. I might respond with something like, “Not so great, I’ve got a low-grade migraine today. I’m just glad it’s not making me feel sick right now.” A benefit of being honest about how I feel is that others tend to cut the chit-chat and take care of business.

    Maybe a series of public service ads about migraine disease would be helpful. They should offer concise, easy-to-understand information. Hopefully, the infomercials wouldn’t be associated with migraine meds so there could be no implication of a cure or “quick fix” as in the advertisements for Cymbalta and Lyrica in connection with fibromyalgia.

    • Thanks for sharing your experience, Beth. It’s great to hear that you’re comfortable being honest with the people you encounter.

      PSAs would be great, though I have no idea where the funding would come from — migraine research is so underfunded that I can’t imagine the powers that be would be willing to divert the money! I agree that anything funded by a drug company would have to focus on the “quick fix” because that’s exactly where drug companies make their money.

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