One of the most awesome things as a migraine patient advocate is watching others discover their voice in the midst of the community. The realization that even in the midst of life with migraine there is purpose and value can be transformative. Walking through that journey with someone is inspiring! For the past year, I’ve had the privilege of getting to know Anna Williams, an admin for three Facebook groups as well as a writer. A single mom of two girls, Anna lives with both migraine and cluster disease, but still finds the time and energy to touch other people’s lives with encouragement and support. Last month we sat down and chatted about her life, her journey into advocacy and what community means to her.
Can you tell us a bit about yourself?
I started having “headaches” at around age 10, but as a farm kid the prevailing attitude was “Don’t let it stop you from getting things done.” For the longest time the pain wasn’t taken seriously, and even a migraine diagnosis a decade later left me with little information. My worst attacks would last 3-14 days! Then in 2009, I experienced a new type of headache. Going from doctor to doctor they subsided temporarily only to re-emerge with a vengeance in 2017.
I still remember pacing the floor a few days before I saw a new neurologist. The pain was excruciating as I held an ice pack to my head and I suddenly got a flashback to my grandpa who had cluster disease. Relieved to figure this out finally, my neurologist confirmed that I had migraine with aura, trigeminal neuralgia and chronic cluster disease. Then began the journey of discovering how to live life wisely with unpredictable and often incapacitating pain.
How did you get involved in patient advocacy?
My journey started when Aimovig became the first preventative to really help. After joining a Facebook group focused on the new medications I scoured all the information available. However, I also really wanted to help others get the information they needed and soon leaped into helping moderate the group. Patient advocacy was new to me, but I was finding my voice while learning to participate more actively in my own health care. Moderating online started to open new doors including writing, but mostly I just loved being on the sidelines cheering others on. Encouraging others to find the best management possible for their headache disorders became fulfilling in a way I hadn’t previously imagined.
How has becoming a patient advocate changed you?
- I’m more confident! That confidence comes from the time spent with patients in groups and hearing their stories. I no longer timidly “hope” that my neurologist will listen, but now go in armed with information about new treatments and am able to explain why I’m interested in them.
- I’m more social! I’d become very isolated over the years, and stepping into this role has really given my social life a boost. I find myself connecting to others in the online community more easily, and even joined a couple of in-person support groups – pre-COVID 19 of course.
- I’m finding my voice! I’m not a public speaker by any means, but now I’m willing to push through my fears and share my story so that others can find validation and then share their own stories.
- I have more hope! Discovering new hope has lessened my depression and anxiety and changed my outlook on life.
What are the greatest challenges you face?
My greatest challenges primarily lie in self-doubt and not feeling good enough. The problems our community faces seem too big for just one person to make a difference. However, this is the beauty of patient advocacy. The more people living with migraine who take steps and find their voices, the louder the message becomes. The more we educate ourselves, the more we can advocate for ourselves. Moreover, once we’ve traveled a path ourselves we’re better able to reach out and help others.
How important is community to you?
Community means I’m not alone and that’s empowering. When I first started Aimovig, I was alone except for one close friend who recommended an online Facebook group for the new migraine medications; little did I know how life-changing that would be. Shortly after, I also joined an amazing group for cluster. As I discovered how amazing it was to be with others on the same journey, I realized that finally there were people I could reach out to, and who could reach out to me!
For years I had felt like I was in the dark, struggling to understand my diagnoses without education on treatment options. Despite trying to research on my own, I felt literally boxed in by what my doctor told me. Being in a community with others has been the single greatest factor that has given me the hope I have today. Without community, I wouldn’t understand my diagnoses from a patient viewpoint, nor would I have heard how different we are about which medication works. When I reached the turning point of becoming an active member and became involved in advocacy, that is when hope became my driving force. The pain no longer isolated me. Suddenly I had resources and felt free to tell my story!
If you could say one thing to encourage other people, what would that be?
Never give up! When circumstances get worse, the pain flares, the medication isn’t working… keep advocating for yourself. Headache disorders are complex. We need many options in our toolbox and often have to think outside the box. The exhaustion of this journey is very real, as is the anxiety that comes from trying endless treatments. Hope is also very real, and being in community and discovering new friends is often a powerful lifeline to find the courage to keep putting one foot in front of the other.
by Shoshana Lipson
Hope for Migraine, Migraine Meanderings
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