3 Tips for Facing Burnout on Headache and Migraine Advocacy

Advocating for your medical condition comes with more losses than wins. I've been an advocate for cluster headaches for seven years, but I know clusterheads who have been at this for decades. We've had a few wins in my time. There's now the first-ever preventive medication approved for episodic cluster headaches available (Emgality®). We have an external stimulator device (gammaCore®), but it seems we're no closer to getting oxygen therapy approved by the Centers for Medicaid and Medicare Services. Those are only the pharmaceutical and treatment roadblocks we face. Where are we at with social stigma? Better, but by how much?

Feeling burnt out

I get burnt out on headache advocacy once or twice a year. There are days, sometimes weeks, where I barely participate in our Facebook groups or talk to other patients (aside from my husband, of course). You can only work towards improving the lives of those with cluster headaches and other headache disorders for so long before you need to take a step back. For me, those moments often hit when I feel defeated.

Facing defeat

Every week, we hear about a cluster headache patient in the United States or abroad whose doctor doesn't believe they have cluster headaches because of their gender, age, or race. We hear from those denied oxygen prescriptions because their doctors or the oxygen supplier or insurance don’t deem it necessary. Some people have no one in their corner to fight for them. It's disheartening to know we've barely made a dent in improving awareness. Doctors and other medical professionals still fail to diagnose and treat cluster headaches properly. Family and friends still think we're making it up, or it's not that bad.

Advocacy is crucial

Advocacy is pivotal work. Many marginalized groups would be nowhere without it. If not for the awareness efforts for AIDS, breast cancer, and countless other conditions, those patients would have fewer treatment options. It's also an exhausting journey where you're continually walking uphill. We can't be everything for everyone. Living with cluster headaches, migraine disease, or any life-altering condition means you must take care of yourself too. If you're facing advocacy burnout, here are a few tips to help:

Take a break to focus on you

There will always be ways to advocate, from events to support groups in person and online. Don't be afraid to take a step back to spend more time with friends and family and reconnect with other aspects of your life. My issue was that it seemed like cluster headaches had taken over my personality. I ran a support group, was on the board of Clusterbusters, wrote a book on it, organized an annual virtual 5k, and many of my social media friends have cluster headaches. I am a writer, and while I used to write for plastic surgeons, dentists, and attorneys, I spent much of 2020 writing about headache disorders. Advocacy and awareness of headaches and migraines were my work and my passion, which made burnout inevitable.

I'm coming off of a four-month hiatus on advocacy. But in that time, I got to spend time with my new baby and put my energy towards things I enjoy, such as finishing a fiction book I’ve literally been working on for a decade.

Focus on one aspect of advocacy

We can't change the minds of policymakers, doctors, and general society overnight. If you're feeling overwhelmed about what you can do to further the cause of headache and migraine patients, pick one area you can focus on. Social media is a relatively simple way to advocate for better care. Annual events such as Headache on the Hill take more energy. While I'm still lurking and occasionally posting in the support groups for cluster headaches, my advocacy focus is our annual virtual 5k for Clusterbusters. It's one way I know I can make an impact on the community without getting heated about how awful we're treated by medical professionals, insurance, and even loved ones. It's a positive part of advocacy.

Prioritize managing your disease

Managing episodic cluster headaches is essential to my overall health, physical and psychological. This beast can attack up to six times a day when I'm in a cycle, and I go through oxygen tanks quickly. Making sure I'm taking care of myself when I'm having attacks is another form of advocacy, in my opinion. How can you help other patients if you aren't helping yourself cope with the condition?

Over the years, I've learned many tips and tricks from other patients, such as splitting my injections because I don't need a full 6mg of sumatriptan to abort an attack. Getting the correct oxygen mask was another life-changing recommendation and something my neurologist would never know to tell me. With cluster headache patients being misdiagnosed for years and then given the wrong prescriptions, we often find what works for us through others who manage the condition.

It's normal to get tired of advocacy when we face obstacles at every turn. Don't feel bad if you need to take an extended break. You may come back reinvigorated and ready for the fight.