A Get Well Message to the Pain Community

By Mia Maysack, PNN Columnist

One of the things that has distanced me from hands-on participation in the pain community is the persistent negativity. I’m not the only advocate that has picked up on this, nor alone in feeling the need to step away as a result.

Don’t get me wrong. As a former healthcare provider, I understand and am sensitive to the fact that people aren’t chipper on their hardest days or when they’re experiencing a tremendous amount of discomfort. And being a patient myself, there have been and will continue to be moments where I drop the ball in regards to being “positive.” My vision is literally and figuratively blurred on those days -- to the point where it’s not easy to see any bright side or silver lining.

But each attempt I make to provide meaningful commentary on what has assisted, changed or even saved my life is met with objections. One of the most infamous lines goes something like: “Some of us have incurable conditions!”

It’s as if my post bacterial-meningitis intractable mega-migraines, irreparable cellular nerve damage, evolving arthritis, immobilizing fibromyalgia, and the fact I’ve lived this way for two decades and counting doesn’t have any merit or meaning.

It’s quite frustrating to devote so much of your experience, skills and compassion to people who condemn you for attempting to transform your suffering – while they contribute to that very suffering. The whole “misery loves company” thing is a bit played out with me. I believe a much more productive use of energy is to get to the root of our misery, as opposed to clinging to it and passing it on.

Any time I offer up alternative pain modalities that have proven helpful for me, along with millions of others for thousands of years, while always treading lightly on the eggshells of disclaimers about everything not being for everyone, nothing can completely fix our problems, it’s a process of trial and error, etc. –  I’m torn down by the very same people.

How is this supposed to elevate anyone or make anything better?

I’ve been mocked, ridiculed, silenced and even threatened when mentioning things such as mindfulness, meditation and neuroplasticity. But companies have invested in and now offer all of those therapies.

This is in part what led me to step away from patient support groups, because most don’t desire actual support, but seek more space to complain. I wholeheartedly understand and believe it is of utmost importance for our grievances to somehow exist outside of ourselves, but I’ve found that support can only get us so far.  It then becomes more about self-help, which is something that most people have a difficult time realizing or pursuing, especially when illness or pain are major obstacles blocking the way.

Sometimes, those of us who have risen from the depths of our own versions of hell are judged and labeled by remarks that we couldn’t possibly be sick. That somehow, we’re more privileged than the next patient or had opportunities that others don’t have and cannot get.

In actuality,  we are revolutionaries who saw that treatments were not working and made a conscious decision to devote our lives to assisting others through their hardships. Not because anything is gained or money made, but because it is the right thing to do. We were once consumed by the fire as well, but now venture out with buckets of water for the rest of you.

It is mostly thankless, often torn down, and difficult to take on the weight of what can feel like hatred, all the while attempting to balance and manage the ailments that already threaten us. Irony is found in the fact that so much of the condemning originates from people who do the absolute least for this community. 

The time has come to understand this conduct as a sickness in itself, and that it causes a negative ripple effect that limits us all from the ability to move forward.

I’m thrilled to see articles about things such as how healing is just as important as pain relief, or how childhood experiences that seem to have little to do with our current conditions can still directly impact how our bodies and minds feel.  And it’s always encouraging to come across a list of low-to-no side effect modalities to at least consider, if not try.

This doesn’t mean belittling anybody's experience. Release the illusion of stories you’ve always told to yourself or were told to you. Make room for a new chapter and fight for your lives, not against those who want you to thrive. And get well soon.

Mia Maysack lives with chronic migraine, cluster headache and fibromyalgia. She 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.