Heidi Brehm’s Advocacy Story

Heidi Brehm’s advocacy story is written and told by Heidi Brehm 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.

Heidi Brehm’s Advocacy Story

The advice often given to prospective migraine advocates is, “Start small and advocate with family, friends, or co-workers.” This suggestion reminds me of one of my first attempts to advocate. I was teaching elementary school and once a month I attended a Friday meeting with staff members who wore strong perfume which greatly increased my migraine symptoms. As a result, I struggled through the day and spent the entire weekend in agony.

After several months of this repeated pattern, I worked up the nerve to advocate for what I needed, a fragrance-free meeting. It did not occur to me that this was an Americans with Disabilities Act issue. I hated the thought of others having to change their actions because of me, but I needed to be able to function. Reaching out to my peers felt uncomfortable, after all, who was I to tell them what to do? That was the principal’s job. So, I sent an email to my principal which explained my situation, and asked her to request that the staff refrain from wearing perfume on our meeting days. It felt really good to speak up for what I needed. A weight had been lifted from my shoulders.

Advocacy Roadblock

I read my principal’s response expecting comfort. I do not remember her exact words, but she made it clear that she was not willing to ask the staff to accommodate my need, I was flabbergasted. She added that I could ask my co-workers myself. I concluded that she thought I was ridiculous for asking for her help. Contacting her had used up all of my courage. I had none left to help me talk with my peers. My principal’s inaction was a crushing blow to my self-worth. I continued to suffer through staff meetings until the end of the year. By then, my migraine had progressed to the point that I had to leave teaching.

Heidi Brehm’s Advocacy Story Made a Difference

Thankfully, that was not the end of my advocacy journey. My self-worth eventually recovered and I discovered resilience, persistence, and advocates who inspired me. I have many cherished memories of my advocacy work which include feelings of triumph, pride, and empowerment.

I have also had many experiences that have reinforced that advocacy is challenging. It is challenging when I speak with Members of Congress at Headache on the Hill and it is also challenging when I ask my loved ones, for the hundredth time, to make less noise or to dim the lights. I remind myself that we all have limits on how willing we are to be inconvenienced or to change our actions for the benefit of others. Advocacy involves pushing those limits, time, and time again while making small gains and recovering from setbacks. At every level, advocacy is difficult, but eventually, if I am resilient and persistent, and with the help of the migraine community, advocacy will help me achieve what I need!