We talk about it. We complain about it. We blame the doctors, the media, bosses, loved ones. But sometimes we bring it on ourselves. Other times we dump it on our fellow migraineurs.
WHAT? How dare I “blame the patient”!
There’s no doubt that we all face stigma. Yet like victims of abuse, sometimes we take our frustrations out by hurting others. We’ve all heard, “You are not your migraine.” We are individuals first. While we share the experience of Migraine, we also come from different cultures and have been shaped by different experiences. Some of us are validated and supported while others suffer alone without any hope.
These differences also extend to our behaviors, thoughts, and the statements we make. Sometimes we can actually make stigma worse for ourselves and other migraineurs. When we direct stigmatizing behaviors and words toward another migraineur we create division in our community by alienating one of our own.
- Making alienating statements. These statements push people away by sending a clear message that they do not belong. It can seem as though we are in an exclusive club with a bright neon sign, “No Normals Allowed”. The problem is that the migraine community has divided itself into little “camps”. We build walls around our experience, refusing to let anyone in who can’t convince us they, too, suffer just like we do. Stigmatizing our very own is all too common.
- “You can’t possibly understand what I go through,” we say to nearly everyone who attempts to understand, shutting off any possibility of ever gaining them as an ally.
- “You obviously haven’t ever experienced a migraine,” we challenge other migraineurs when their experience or opinions don’t match our own. If it doesn’t fit our experience, we turn on them.
Over-explaining our trigger avoidance measures. It takes diplomacy to request accommodations. There’s a classy way to ask and lots of offensive, irritating ways to ask. When our social skills fail, we can seem like demanding, whining children. Keep it simple and straightforward. There is no need share everything each time. Allow others the opportunity to ask follow-up questions.
Excessive or overly-dramatic complaints about symptoms. Migraine symptoms are bad enough without exaggeration. For example, when a doctor asks you to rate your pain from 0-10 and you answer by screaming, “Fourteen!” I understand the impulse. We want our pain taken seriously. The truth is more helpful. Even at my worst, I was still able to effectively communicate with healthcare providers. Most of us learn early on that most people don’t want to hear a play-by-play of all our symptoms. We have a legitimate need to talk about these symptoms, just not with everyone we meet.
Failure to communicate with others. On the flip side, we can hold back so much that people are completely unaware of what we are experiencing. We rob others of the opportunity to support us by refusing to talk about Migraine at all.
Behaving defensively without obvious cause. In therapy terms, this is called projection. We’ve all had unsavory experiences. Sometimes those old hurts get triggered by random events and we lash out at innocent bystanders.
I would like to invite you to join with me in fighting stigma by carefully examining our own role in maintaining it. We’ve all been guilty at least once. Let’s pledge to stop the stigma by cleaning up our own house first.