The validity of pain.

chronic pain, EDS, Ehlers Danlos, lymphedema, POTS, PTSD, Uncategorized

“You look well, I thought you said you were sick?”
“So when will you get better? How long does this last?”
“Chin up. Don’t let it get you down.”
“Maybe if you just exercised more…”

How do you explain to others what it means to have chronic pain?

That I have back up plans for my bad days when I can’t walk. That a smile on my face doesn’t equate a lack of pain in my body. That my clothing size isn’t indicative of my longevity. That my outer appearance has no bearing on my internal health.

I find myself trying to explain to others my situation looking for understanding or acceptance yet feeling as if I’m having to justify my diagnosis to them. It feels at times that I’m marked with labels that do little to solve or console the ache that doesn’t leave yet at least confirm for me that it’s not just my imagination.

EDS, PCOS, lymphedema, POTS, PTSD. I’m an abundant alphabet of theories confirmed and devoid of solutions. Like the remnants of an oil spill lapping up on a coastline. The damage might visibly dissipate but the water is never untouched again. The toxicity only settles down to the rocks and becomes part of the body of water despite all the good intentions and valiant attempts of those to save everyone from the contamination. Yet, in this case, the source was written into my DNA and there’s no escaping it or the pain. The true damage are the biting remarks and slights not my conditions.

I can smile, I can force myself to do activities, but it’s not as if a sign lights up above my head to warn others that I’m on the brink of tears or exhaustion with the effort. So, to the casual observer, I seem fine and it’s assumed that there’s nothing “wrong” with me. That I should be able-bodied if only I put my mind to it. As if to be anything but able-bodied is a character flaw and under my control. Then again, what exactly is “able-bodied” or “able”? Don’t we all have different abilities? These are not attributes or flaws merely aspects of ourselves.

There’s a designated disability parking space for our home. I see the irony to some that I accept the resources for being disabled yet take issue with the denotation yet I’m not prideful enough to be foolish as to turn down help that I need. I was relieved to have the help but humbled at the reality that I needed the help. I would be lying if I said it didn’t scare me that I need to rely on others for help with my children and that there are days where I’m in so much pain I can’t walk. No one plans for these things yet changes in health are part of life. What I hadn’t anticipated was the anger from others.

The random neighbor walking by, stopping and staring at my car, staring up at our house, and back again at my car shaking their head. Me spotting them from my desk, crying in shame and frustration, hurt that someone I thought was a friend was secretly judging me. When I saw them a week later they joked, “Hey, nice job scoring the parking spot.” With a chuckle and a smirk. Without a hint of sympathy. Only smug indignation of feeling justified in criticizing me. “We need the spot…I need the spot. Me and the kids.”
“Oh, yeah. Your husband mentioned they’re on “the spectrum”…” with a roll of his eyes.

I’d like to say I argued with him. Railed at him for his prejudice and insensitivity but I did not. I’ve tired of having the same debate continually with others and merely wish to not battle any longer. The fight has gone out of me as of late.

It feels unreasonable to expect others to understand or want to be informed of my conditions. Instead, I answer what is asked and try to be patient with the pain within and that which I receive from the carefree obliviousness of those that can’t relate. We all will face a health crisis some day of our own, or someone we love, and I hope we all remember that and treat others like myself with compassion.