Tuesday, June 8, 2021

My Purple Garden

 

Lisa Advocates by Wearing Purple and Communicating

Lisa advocates by wearing purple and communicating. This story is written and told by Lisa 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.

Lisa Wears Purple

I consider myself a walking advocacy story and almost always visible with some sort of purple color on me. I wear purple clothing, sport purple accessories, and often have my hair streaked with a fun purple pop. Thank goodness purple just happens to be my favorite color! This was true even before I knew it was the color that represents headache and migraine awareness.

In public, no matter where I might be, such as stores or doctor offices or walking on our local boardwalk, people will stop to compliment me on my purple attire and especially my purple-streaked hair. This opens up the opportunity to explain why I wear purple in regards to migraine awareness. Invariably people are genuinely interested and curious for more information because they usually know someone who suffers from migraine disease, or sometimes they themselves do. It’s amazing how many random situations come alive with opportunities to advocate! 

For instance, when I learned that purple was the color of headache and migraine awareness, I asked my hairstylist to put a streak of purple in my hair. She was quite inquisitive about the subject of chronic migraine, so I enlightened her. It turned out that she, too, was suffering and thought she just had very bad headaches once a month. I shared my knowledge and experience which, in turn, led her to call my headache specialist for treatment! Now we both wear our hair streaked with purple to spread migraine awareness.

Lisa Advocates at her Doctor’s Office

Another practical opportunity for advocacy is every time I see a new doctor and need to fill out medical forms. I have to list my current condition of chronic migraine and all the medications I take to manage it. The medical assistant and the doctor get an earful as to the significant burden managing chronic migraine is for me, and I explain how my treatment going forward with any new medications must be viewed in light of migraine disease. Many health care workers do not realize the seriousness of disability that comes with coping with migraine disease. A patient has to first and foremost be his or her own best advocate before they can be a good advocate for the rest of society.

Lisa Advocates by Telling her Story

My best migraine advocacy stems from my ordinary, everyday experiences where I find myself in the right place, at the right time, and talking to the right people.

I felt inspired to create a migraine advocacy video that shares a little peek into my day that I might experience while dealing with a migraine attack.  It not only highlights my thoughts and feelings but demonstrates how my husband is affected as well.  My one son “plays the annoying part” of Mr. Migraine.  The short film is entitled, The Unwanted Guest.  It is found on YouTube under AleoMedia production.   

I wanted to share my first publication of my migraine advocacy journey to which  I have been committed for several years now.  If any of you follow me on social media, you are well aware that June is headache and migraine awareness month and the color associated with this cause is purple.  I like to spread my pops of purple anywhere and everywhere. Thank you for always supporting and encouraging me with kindness and compassion.  






Unfortunately, the reality of migraine disability looks and feels like this


and this.        




If I have to cancel plans, please do not take it personally.  It is not because I want to.  It is because I need to.   I am slow.  I am tired, but I am doing my best. 

I continue my advocacy work to educate and help others by trying to erase the stigma of migraine disease.  It is so much more than "just a headache."    





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