If you need so much help, why aren’t you asking for it?

In 2010, after a great deal of lobbying by an influential group of headache specialists, the National Institutes of Health (NIH) held a workshop on headache research that included a small group of people representing stakeholders in headache medicine: representatives from various NIH institutes, various headache organizations, headache specialists, researchers, and patient advocates. The meeting was much anticipated; the headache research community had long wished that the NIH would devote some attention to its needs, and this was a chance to be heard. But attendees drew a blank when the NIH asked how the headache research community might foster partnerships with patient groups to increase funding, resources, and education. Although a few patient advocates were in attendance, none of them could name a strong patient-driven organization for migraine. According to one source, a frustrated officer from the National Institute of Neurological Disorders and Stroke (NINDS) retorted: if people with migraine disorders have all of these needs, then why aren’t they doing more to advocate for their cause? [emphasis mine]

– Joanna Kempner in Not Tonight.

I could have started a patient organization, but instead I spent two weeks trying to figure out how to pay for the part of my meds my insurance wouldn’t. I could have seen if the AHS had any advocacy positions I could fill in my community, but instead I spent 6 hours getting insurance to cover just one of my prescriptions. I could have talked to my MLA about getting an important treatment for chronic migraine covered under the provincial healthcare program, but I spent the time getting my meds moved around between pharmacies and trying to figure out why my insurance wouldn’t cover them.

I could have organized with my fellow patients to see what we could do to get migraine research properly funded, but I had 1172 days with migraine in 5 years. I could have gone to a headache conference, but was too sick to get on a plane for 4 years.

I tried to educate the people around me about treatment deficits for migraine and got recommendations to exercise and stay hydrated. I spent months getting accommodations for migraine in my workplace and then was told they weren’t relevant when I tried to use them. I might have started organizing for migraine when I was in my 20s, but I had been told so many times that I was weak and lazy and attention-seeking that I would ask myself if I was faking for attention while lying alone on the bathroom floor in the middle of the night. I tried to have a conversation with my neurologist about the lack of headache specialists and he told me migraine patients were boring.

Migraine patients are prevented from advocating for their cause. Like for many people with illnesses, the structure of our work and insurance systems eat up enormous amounts of time and energy that could otherwise be used for healing, community building, organizing, and advocacy. On top of all that, the dismissal and minimization of migraine as a disease in the public at large means that we often don’t feel like we can ask for help, let alone demand support. The general stigma of migraine means that seeking help and support is often cast as weakness, whining, and attention-seeking and advocating for yourself or other patients like you can cause you to receive even less support and help. And the lack of legitimacy migraine has in the medical profession means that it’s hard to get a diagnosis at all, let alone treatment. You’re seen very differently by your community and your doctor if you are organizing a 5K for Cancer versus a 5K for Migraine.

Also it is nonsensical and cruel to run medical research like this – giving money to diseases based on how well-organized and funded and photogenic patients are? That sets your healthcare system up to find and fund expensive treatment for rare diseases instead of reliable, affordable treatments and preventative public health interventions for the most common and disabling illnesses.