A Toxic Violation
/By Mia Maysack, PNN Columnist
On Saturday, I woke up to an experience far too common.
A column I wrote on my pursuit of holistic health had been shared in an online community for people with pain and chronic illness. The column was referred to as "shameful” and full of "bull crap." I was accused of being "insane,” a "bootstrap ableist" and “spreading hysteria.” You get the idea.
This type of toxic negativity online is mostly faceless and comes from hiding behind the comfort of a device screen. It doesn't belong in a supposedly safe space, nor does it help or improve anything. Even on my worst, most painful, dark and isolating days, I never have nor will I use that as an excuse to tear others down.
Some people in the pain community claim to desire understanding, acceptance, empathy and compassion -- all the while offering anything but.
So many also demand change without the realization they’re contributing to the very problems they claim to want to resolve. It would seem the only fingers being lifted are to spread hate -- as opposed to directing that same passion toward legislative reform, writing a bill, calling Congress or signing a petition, for example.
If we're not physically healthy enough to contribute fully to life, then bullying should be the last thing we’ve got the energy and time for.
This takes me back to the very first (and last) "support group” I attempted to be a part of prior to starting my own. It’s prestigious, well known and in cahoots with many other affiliations.
Because I'm not spiteful and feel there's already enough hurt to go around, I won’t name or put them down.
In that group are thousands of people from around the world who could attest to the way I felt all my life. I hoped that that I’d finally came across a place where I belonged.
But when confiding to these people about a treatment plan gone awry (I still live with the repercussions to this day), they turned on me -- claimed I was just attempting to scare them, making things up, and that I should've kept the information to myself. Even my medical background was called into question, despite the grief I was still enduring over loss of career.
To make matters worse, prior to me even seeing any of this, the group’s administrators muted further commentary so I wasn't even able to defend myself or the way my words had been twisted. But they still left it there as a spectacle for all to see. It struck me to the core for multiple reasons, so I ultimately chose to step away and haven't looked back.
Those of us who have come to a point of using our last bit of energy to reach out cannot afford being pushed off the ledge we are already on. The fact that isn't being contemplated or taken into any consideration is a sickness in itself. This toxic negativity is real and may be why my approach is internalized by others at times, even though that's not the whole picture of who I am.
How I live with multiple intractable, lifelong and incurable diseases is by continuing to study and having an intimate relationship with science via my own body chemistry.
Whether it's a convenient truth or not, there's merit to the parasympathetic system. There’s power in working through trauma, taking ownership over our thoughts, approaching ourselves as a whole person and not allowing the conditions themselves to dictate our identity.
I've often been asked how I am able to live my life under the scrutiny of what I go through. I don’t claim that I’m fixed, cured or have anything close to all of the answers. But I do know that instead of complaining, wallowing, and holding onto anger and resentment -- I choose to not allow this to define me. My heart is poured into service, volunteerism and fighting for human rights -- for everybody, even those who throw dirt on my name.
We are not wrong for how we feel. It's reactionary to lash out or play the blame game by turning on each other. It only intensifies the battle we're already in. Just because someone else's journey looks different and doesn't align with yours does not excuse, justify or make it acceptable to judge, ridicule or belittle them.
As long as those toxic violations remain a part of our approach to ourselves and one another, we shall remain sick.
Mia Maysack lives with chronic migraine, cluster headaches 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.
