By Mia Maysack, PNN Columnist
June is Migraine and Headache Awareness Month in the United States. This year’s theme is “Advocate for Access.”
Although I understand the intent behind awareness months, to those of us who truly live with a non-stop condition, they can border on being a tad mundane. Especially when the execution of the awareness itself does very little to propel us forward in any meaningful way.
I live with deeply rooted and untreatable nerve damage from an incurable traumatic brain injury. Bacterial meningitis almost claimed my life as a child. My brain swelled up and still feels pained and swollen even now — the very definition of intractable pain. Because migraines are literally my each and every day reality, I’m sick and tired of focusing on or talking about them.
From what I’ve witnessed, awareness campaigns are often a repetition of the same conversations, among the same people and within the same circles. We as “migraineurs” don’t need to continuously hear about what we already know. In my opinion, it’s an unnecessary use of precious energy and the impact doesn’t go as far as it could.
The “pain community” generally seems less of a community and more like a clique — a repeated line up of only certain people’s voices being heard and a select few being invited to participate in events.
It gets even worse than that: I recall emerging onto the pain scene out of an absolute last resort. I jumped head first into involvement with every organization I could find and joined several support groups out of sheer desperation. One day, a routine migraine treatment with Botox went horribly awry — to the point I still deal with the repercussions to this day.
I immediately logged on to share this experience, not in an attempt to scare anyone but to raise awareness and hopefully assist in others not encountering the same thing I did. I hoped for some compassionate empathy but what I received was the exact opposite.
I was torn to shreds online by keyboard warriors claiming not to feel well enough to physically function, but clearly energized to the point of dragging me down. Before I was given a chance to clarify or further explain, I was muted by administrators. This felt violent, uncalled for and oppressive. I was bullied and shunned at a point in time I couldn’t afford to be.
These very same individuals have the audacity and nerve to schedule days of remembrance for those who could no longer accept or deal with their pain, while simultaneously playing an active role in pushing people over their edge, probably without even caring or realizing it.
I view it as a sickness, that a person would demand and expect consideration and respect when they don’t demonstrate or possess it for others. It’s a contest of underlying comparison as well as competitive victimization: I’ve hurt longer than you, worse than you, my life has been harder than yours, and no one else’s life is as bad as mine.
Is that really a game you want to win? How could one ever expect to feel better with a fixation like that?
I’ve come to realize that many who claim to want improvement aren’t truly committed to it. It takes work, a retraining of our minds and an entirely new approach to not only how we care for ourselves, but how we care for others.
This questionable code of conduct is an illness in itself. The resistance to actual improvement is in part what’s keeping members of these groups sick — not to mention the fact that some remain utterly attached to their conditions to the point they’re unsure of any identity outside of them. If those they so faithfully follow were truly interested in the well-being of their devoted followers, they’d be attempting to shine a light on the darkness as opposed to benefiting or profiting from it.
I remained quiet on this for a long time, but one thing about my advocacy is that it’s real. Some people love that and others hate it. I’m not afraid to burn bridges, especially the ones that I built. In case you haven’t noticed, the whole world is hurting and the healing of our planet is what matters. Not just you and your cause.
Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.