Stigma is defined by the Oxford English Dictionary as “a mark of disgrace associated with a particular circumstance, quality, or person.” Migraine stigma encompasses all the negative stereotypes, false assumptions, and disbelief hurled at people with migraine, and while stigma is often an external force, we can also internalize stigma so that we actually start to believe that migraine is “all in our head”; that we are weak or lazy; that we are making a big deal out of a little headache; or that migraine is some form of personal failure. That’s how stigma works: if we hear the same nonsense enough times in lieu of accurate and compassionate perspectives, it starts to gain social traction.
At the roots of migraine stigma is a lack of accurate information, understanding, and empathy. The obvious solution is that we must do our best to educate others and convey our experience of migraine to the rest of the world. As well as connecting and supporting people with migraine, this is largely what migraine advocates (a group including patients, doctors, caregivers, and allies) aim to do.
That’s all well and good, but whether you are a gung-ho full-time advocate or brand new to the scene, you probably don’t always have the energy, resources, or receptive audience needed to climb atop the nearest mountain and shout your truth with confidence and fervor. I know I don’t.
At best migraine stigma is bothersome. At worst it’s dangerous and can contribute to feelings of guilt, failure, depression, and even suicidal thoughts. So realistically, what can we do when we are dealt a dose of migraine stigma?
Here are some loose guidelines I created to take better care of myself when stigma rears its ugly head:
A person I don’t know very well, who has little bearing over my life, says something ignorant about migraine.
Walk away / block them on social media
A person who I know fairly well, who has some involvement in my life, says something ignorant about migraine.
K.I.S.S. it. (“Keep it Short and Sweet”) Ex. “Actually, migraine is a neurological disease that can be incredibly disabling. According to the World Health Organization migraine is the sixth highest cause worldwide of years lost due to disability.” If the person wants to engage further, I might oblige or offer to discuss at another time depending on my level of comfort.
A person with whom I am close, who is very important in my life, says something ignorant about migraine.
Make plans to talk to them at a later date. Think very carefully about what I want to say, and maybe even write it down. Tell them how important it is to me that they try to understand my circumstances more fully. Include research if necessary. Attempt to be satisfied that I have shown the courage to say my piece regardless of their reaction.
None of these situations are easy or desirable. Perhaps for some of us, the best way to address migraine stigma is to take the confrontational part right out of it and write letters, make art, publish blog posts, and talk to others dealing with migraine so that we can respond thoughtfully in a supportive environment rather than reacting defensively in situations where we might not have any backup.
Every little step we take to let the world know the truth about migraine counts, but we are all only human, and it’s okay not to always have the right answers, or even the energy to speak up.
When have you confronted or ignored migraine stigma in a way that felt good?