Migraine doesn’t define me, but it’s had a larger than desired impact on my life. More than once in my career, I thought work was the problem. After 15 years with one employer, I changed to a new company. Migraine followed me down the road to the next office. After several years of increasing migraine frequency and severity, I took a long-term leave of absence. Again, I hoped I just needed a little time away from work stress and things would self-correct. This is probably when I really learned that migraine is a disease and not a side effect of stress or work.
During my final leave of absence, I had a hard time settling myself. I was a very hard working, hard driving career-focused woman. Who was I without my job and employees? To help fill the void of feeling unproductive, I expanded on connections I’d made in the volunteer world while working and decided to focus on volunteering. During the 2014 Headache on the Hill advocacy event, I met Shirley Kessel who was just becoming more involved with Miles for Migraine. She needed volunteers, and it seemed like a perfect fit for me to be working with a migraine non-profit since migraine had such an impact on my life.
Volunteering provided structure to my seemingly unstructured life. I was contributing and productive, and it gave me the much-needed feeling of belonging. My migraine attack frequency had not reduced, but I was able to contribute due to the virtual nature and flexible schedule. As my leave of absence approached its end, I talked to my employer about returning part-time or in a role that allowed me to work from home. They didn’t have anything that fit the bill. I either needed to come back to the office full time in my existing role or move on. This was pre-COVID when flexible work arrangements for people with disabilities such as chronic migraine were much less recognized.
In my time away from work, I learned a few things about myself. I need to work or volunteer in some capacity. I also knew I ultimately needed to find a job, as I needed income. I’d heard how challenging the Social Security Disability Insurance process was and decided I would do everything possible to avoid it. The more Shirley and I worked together in our volunteer roles, the more we started to realize that there was potential for much more with Miles for Migraine — if only we could be more dedicated to it. Through lots of hard work on Shirley’s part, Miles for Migraine secured funding to be able to hire the two of us to focus on expanding our reach.
There is no way to know where an opportunity will lead, but I’m a firm believer that despite the unpredictable nature of migraine, we still have some control. I feel incredibly fortunate to have found my position with Miles for Migraine and to contribute to the disease that impacts me so greatly. Whether you desire a role with a migraine or headache disease advocacy group or any other organization, I have a few suggestions.
- Be willing to volunteer your time initially to show your value.
- Be up front with those you are working with about your boundaries and limits. Don’t commit to more than you can take on. Better to under promise and over deliver than to over promise and under deliver.
- Once you start volunteering, it’s not uncommon to be asked to participate in new projects. Be willing to challenge yourself (most of us are capable of more than we give ourselves credit for). But regularly check in with yourself to be sure you are maintaining your health.
- Communication is key. Just like with a paid job, the most valued volunteers do what they say they will and meet planned deadlines.
- If you are interested in moving beyond a volunteer role, voice it. At the same time, know that many non-profits and organizations work with limited funding. It could take time to create the financial resources to support a paid position.
For me, taking a role with a non-profit meant a significant reduction in my salary. I was a little nervous about that at first, but I adjusted. The lifestyle changes – working from home, flexible schedule, understanding co-workers — far outweigh the loss in income.
Whether you are out of work by choice or due to job loss, consider starting back by volunteering. It’s a great way to experience something new, show your value and potentially identify a new job or career.
Miles for Migraine