Pushing Harder in the Face of Advocacy Success

Sometimes, I forget I’m an advocate.

More precisely, there are times I forget I need to advocate. For others, for my family, for myself.

Surrounded by a supportive community

Sometimes, when surrounded as I am by a community of empathetic, like-minded, warriors, I forget that others outside of our community don’t see us. That there are countless people out there who don’t know what we’re experiencing or don’t care or simply don’t understand that it is a big deal.

I understand that my ability to forget this is rooted in a kind of privilege. I have the ability to work, mostly unseen and unheard, from home. I also have the honor to partner (at least part-time) with amazing writers, advocates, and companies who do understand invisible chronic illness. I also have the most supportive spouse I could possibly envision. These are incredible blessings, and I never forget them for a moment. But having them, I sometimes forget the burdens.

Burdens of migraine

I forget that I have multiple conditions, including migraine, that society stigmatizes on a regular basis.

I forget that I have significantly altered my daily habits to accommodate a severe disability.

I forget that my success comes only as far as I can respect the boundaries this disease imposes.

That is, I forget until I’m forced to remember.

I forget until I am forced to admit to my neurologist that the medications aren’t working, that my symptoms keep flaring, that often I’m getting worse. Until I am striving to convince her that a new symptom is both real and disabling. Until I leave her office with no more hope than I had when I went in.

I forget until I find myself working through a bad attack — one hand pressed against my temple, the other hand growing weaker and weaker, frustratingly unable to hit the keyboard hard enough to make it work — when I should be resting because to stop or call in sick would make me appear unreliable, bad, or less than.

I forget until my 15-year-old daughter comes to me for help, looking for something to take away the migraine attack she’s had for days, and I still have nothing new to offer to her.

I forget until I remember we are still misunderstood and stigmatized. That, despite our progress, migraine is still seen as an excuse or a weakness. That migraine is still, to the general public, synonymous with headache when it is anything but “a bad headache.”

Advocacy matters

We have come a long way. Our advocacy efforts are paying off. We have thunderclap campaigns, an awareness month, and an annual legislative call to action. People are hearing the message that migraine is a serious neurological disability. But we haven’t come far enough.

The financial impact of migraine disease is still very real and tremendously burdensome. Migraine research is still underfunded. Migraine specialists are still hard to find.

Despite our progress, people without migraine still don’t understand the impact of migraine, and people with the disease are still — in various ways — blamed for having it. And so we still need advocates. We still need explicit, purposeful calls to action. We still need to tell our stories and communicate openly with one another.

So that’s what I’m doing. I, along with other advocates and writers in the field, am talking and sharing so that we all may be seen and heard. Because even when I forget that I’m an advocate, this disease makes sure to remind me.

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 (2)
  • Katie M. Golden moderator
    8 months ago

    Fantastic article Sarah! I totally understand what you mean!
    I tell people all the time how to prepare for doctor’s appointments and how to advocate for themselves, but recently I went to a new specialist who absolutely did NOT listen to me, no matter what I said or tried to explain. I walked out of there in tears. That was a moment when I realized I’m a patient too.
    Hugs,
    -Katie Golden

  • Sarah Hackley author
    8 months ago

    I’m so sorry you had such a negative experience. Self-advocacy is a long path, I think. We have to keep coming back to it, and reminding ourselves we aren’t done yet. Thank you for reading and commenting! I hope you feel well today. 🙂

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