From In-Patient Interview to Migraine Advocate

Alexis Z’s advocacy story is written and told by Alexis and edited by Miles for Migraine team.  Miles for Migraine’s Advocacy Stories highlights the many different ways that health advocacy shows up as individuals advocate for themselves and others. This project is not limited to migraine and other headache disorders, nor is it limited to individuals that personally experience a health condition.

From In-Patient Interview to Migraine Advocate

Last summer, I was interviewed by Health Central magazine. Ironically, the interview happened while I was an in-patient at the Diamond Headache Clinic in Chicago. They wanted a “positive” story to help inspire others with migraine. In my head, I thought, “Ummm I guess I can make living with this crappy disease positive”. I didn’t really realize how positive I’ve had to make my life seem while living with migraine.

A Positive Outlook on Migraine

It’s really hard to think positive when you’re living with daily head pain and all the other side effects from it. I’ve had migraine for 6 years and I’ve had to medically withdraw from an on-campus college. I am currently enrolled in an online college and working on getting my bachelor’s in psychology. I want to be a chronic pain therapist. There aren’t courses for that yet, but by the time I get my bachelor’s and master’s, there should be.

You Aren’t Alone

I wasn’t quite sure where the article I was interviewed for would be published, on their website or in their actual magazine. I’m sure I was told but my migraine brain got the better of me there. I was very surprised when one of my Facebook friends saw the magazine in their neurologist’s office. It made things surreal because I realized that my story was in a magazine in doctor’s offices all over the place. People would be reading about my story and know they aren’t alone. My biggest reason for wanting to do the interview was wanting others to know that they aren’t alone.

Finding a Migraine Community

I was ‘alone’ in my migraine journey for a while without knowing there was a migraine community. I had my parents, who are my biggest supporters, but neither of them lived with migraine. In 2019, I was able to attend my first Retreat Migraine. The minute I walked into that conference room, I felt at home. I finally found my family within the migraine community.

Migraine Advocacy Matters

That was when I was introduced to the world of advocacy. I love it so much. I just want to reach others with migraine who may not know about the community and let them know they aren’t alone.

Tell your Advocacy Story

Do you have an advocacy story to tell like Kimberly’s Self-Advocacy Story? What is one of the most memorable advocacy experiences in your headache disease journey/daily life? Try to recall a time when you practiced advocacy. Perhaps you shared your story, posted on social media, or attended an advocacy event such as Headache on the Hill or a Miles for Migraine event.

Looking back on that experience, what did you notice? Did you experience a negative moment such as shame, stigma, or a positive moment such as joy, hope, or relief? If there was conflict, did you resolve it or was it a conflict that still affects you today? If the outcome was positive, how did that make you feel? Did the outcome cause you to advocate again for yourself? How has your most memorable story shaped you today? There is no right or wrong way to share your story.

Donate

Are you inspired by these advocacy stories and want to donate to  Miles for Migraine? All or part of your donation may be tax-deductible as a charitable contribution. Please consult with your tax advisor. Funds raised help with our operational costs so that we can continue to produce races and youth camp events. Money raised through donations and race registrations goes directly to medical organizations researching migraine.