Nikki’s Advocacy Story

Nikki’s advocacy story is written and told by Nikki 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.

Nikki’s Advocacy Story

I once had an aide working in a medical office express interest in my disease, or at least that is what I thought at that time. He was setting up equipment in the office as I started to share my story. I talked about my accident that caused my migraine disease to shift from episodic to chronic and explain all of my symptoms, which is more than just head pain. 

After sharing my story, he told me there was a “cure”. If I suck on a sugar cube daily, I will no longer experience migraine attacks. If only it was that simple. 

I was insulted, angry, and offended by his comment. He implied that I was not living with a neurological disease that had no cure. Also, that the need for a headache specialist and a team of doctors to manage my chronic migraine disease was not needed. Or that I did not do my research on the disease and wasn’t aware of available treatments or therapies. That it is my fault I experience migraine attacks.

Nikki Changed the Conversation

It took me a few moments before I could find a response. Many thoughts ran through my mind, but I wasn’t sure what to say. I wanted to be polite with my response but also wanted to educate him on the disease. However, I wasn’t sure how. In the end, I said, “thanks for the tip.”

As I have increased my advocacy efforts through working with Miles for Migraine ACT NOW Program, Chronic Migraine Awareness, Inc, and Headache on the Hill, I often find myself coming back to that moment. I wish I would have said something different, such as “migraine is an incurable neurological disease” or “according to the World Health Organization, migraine is the second most disabling disease worldwide.” I wish I shared something impactful, instead of implying to this person that it was okay to be dismissive of a very real disease. 

However, I’ve come to learn advocacy is a journey. Since then, I have become more educated, knowledgeable, and better equipped to handle uncomfortable situations. I now use my voice to speak up and practice loving and kindness towards myself as I did the best I could at the moment.

Tell your Advocacy Story

Do you have an advocacy story to tell like Nikki’s 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.