Stacey’s Migraine Lessons

Stacey’s migraine lessons is a story told and learned by Stacey 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.

Stacey’s Story

Thirteen. Normally this is the age that shapes you: you begin to find who your friends are, discover your awkwardness, and begin the path to independence. This did not happen for me. Instead, migraine happened and ruined what should have been a normal teenage experience, a loss that I still grieve to this day. I questioned why I was different, and why I couldn’t be like other kids. My mom would tell me that I just had more “brainpower,” a moment of welcome levity that always made me laugh. Even still, my migraine led me down a path of depression, loneliness, and frustration. Cincinnati Children’s Hospital was my only hope—and it was their incredible team that saved me.

In high school, I felt like a walking time bomb. I loved to cheerlead and made the squad junior year but never knew when my “migraine friend” would rear its ugly head. My “friend” caused me to miss practices and competitions, and sadly my unpredictable migraine and the feeling that I couldn’t be counted on eventually discouraged me from even trying out the next year. This intensified my progression down a path of anger and frustration.

The school didn’t understand my illness and thought I was skipping school when I was just trying my best to both works and survive this horrible disease. It took a note from my neurologist to remove me from the truancy list, but I had already been labeled by front office staff, teachers, and peers. No one asked me if I was ok, no one sat down to talk to me, no one wanted to know more. I was labeled a failure due to something out of my control. 

Looking Back

Now, as an adult, I look back at my experience and think about how I was able to cope all of those years ago. It was a lonely time for me: teenagers don’t often share their struggles for fear of being judged, and I didn’t have the opportunity to connect with other teens experiencing migraine. I felt like I was the only one going through this painful experience. Yet my medical team – the doctors, ER staff, and amazing specialists—remained constantly by my side. If it wasn’t for my pediatric neurologist at Cincinnati Children’s Hospital, I can’t imagine where I would be today or even if I would still be alive. I hadn’t yet learned to cope with migraine, and she was the one who taught me how to manage this disease gracefully.

Stacey’s Migraine Lessons

One of my key takeaways from the trials and tribulations over the years is a sense of balance: you learn to embrace the good days and learn from the bad. Learn to set boundaries and make a plan that works for you. You learn which doctors to work with and which ones to part with. You find your voice, find your community, and establish a support system that enables you to advocate for yourself and others.

The migraine community is so strong and full of some of the bravest people that I have ever met. Our lives will never be easy, but we will continue to work towards conquering life with migraine and being a voice and support for those like us and our allies. For those who want to help us, we appreciate you.

We need more like you. You are the people who make a difference. 

Tell your Advocacy Story

Do you have an advocacy story to tell ? 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.