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.

A badge or a burden: the trauma we carry

adhd, ASD, atypical, autism, Complex PTSD, Homeschooling, mental health, motherhood, neurodiversity, parenting, PTSD, special education, special needs, special needs parenting, trauma

My friend phoned me to tell me what I expected. Her mother had been placed in hospice only days before but I knew. We only called each other when it was too hard to write what we needed to say or we needed to hear each other’s voices. Her mom was gone.

I sat in silence and thought about her family and my own. Trying to imagine what my friend was feeling at that moment. Thinking of how many struggles she had endured in so little time. How the length of our friendship was colored by so many of those for us both. I began summarizing in my head all of those traumas in my own life and began with the one that my family thought was amusing and I found painful still. Our move to Oregon (but that’s a story for another time) and touched upon the one that truly shaped me from that day forward.

I’ve had PTSD since I was six. It began the moment I watched our family home burn to the ground. Frozen in place, listening to the sounds of my mother screaming and keening. I would like to say things improved from there but they didn’t. So I learned to expect another crisis around every corner and that good luck was for other people. It took years to unlearn this thinking, a diagnosis of Complex PTSD
, and the acceptance that we all have our sorrows and come 1through life wearing our setbacks as a badge or a burden.

The layers of trauma changed in variety over the years. The moments compressed into me like the striation marks in the earth. Ever changing, ever present, and unbidden. Once a source of shame and now simply marks on my body like the remnants of pregnancy or aging. Something I can acknowledge and feel a sense of achievement from or something I can hide and only deepen the pain brought on by seeing them in an unkind light.

Listening to those dark, ugly voices of criticism in my low moments can dtill happen but I’ve learned to question those voices and quiet them with kindness for myself. Those same voices that lurked throughout my childhood are now gone but the memory of them haunt me like tinny piped music. I can choose to escape them or confront them but I acknowledge that the hurt from those people marked me but hasn’t marred me.

Now, as a mother, I feel as if I have a new terrain of PTSD. The terrain of trauma sustained by my children. The bullying, the attacks, the judgement.

Accepting my children’s neurodivergence wasn’t difficult. Accepting the treatment they receive from others is something I have to fight on a daily basis at times and it can feel insurmountable. From strangers to doctors, to teachers to extended family, we’ve had a litany of interactions where we’ve had to navigate the misunderstandings around autism and tolerate or battle the misconceptions people have of autistic people.

Whether you’re neurotypical or neurodivergent, misunderstandings happen constantly but the difference is that I can process this and respond whereas my kids, by in large, cannot. The lag time in processing in combination with their trauma compounds into a snarl of frustration that results in simply being overwhelmed to the point that they shut down or melt down. Many of us can relate to this feeling but not to the extreme that they experience. Their experience is our version of being tongue-tied amplified by the thousands. Take that feeling and color it with trauma and they end up blaming themselves for not being able to keep up or join in a mundane conversation.

It was during one of these interactions recently that I had an epiphany. Because autistic or otherwise, trauma colors our filter of the world for better or worse and that filter never leaves us but can unexpectedly be a strength. For instance, and I’ll freely admit I’m biased, my kids are the most thoughtful and forgiving souls I’ve ever met. They will go out of their way to be kind to others and generous to a fault. Their struggles to find and keep friends haven’t hurt them but made them more empathetic towards others. Maybe a little too intensely at times, but all and all, to their betterment.

After three long years of trying to make public general education work for both of our kids we made the hard decision last year to place our son in a self-contained classroom and opt out of school completely for our daughter and it’s been the best decision we could have made for either of them. I had many doubts seeing that I knew little about special education three years ago and never intended to homeschool and was always an advocate for public schools. Especially the strong belief of staying in your neighborhood school yet when that school doesn’t want your child to attend, and makes it clear that they are not willing to accommodate them, you’re not left with many choices.

I feared that she would be socially isolated, bored, or – worse – regress if we homeschooled. To my relief, none of that was true. Except for she admittedly became lonely until we found independent studies and activities for her to join with like-minded kids. (It’s no easy feat to find other eight year olds who want to read history books and knit. We found the first and the second request was met by her making friends with the “Chicks with Sticks” club at her grandmother’s assisted living facility.)

We allowed her to unschool for a year and then gradually added academic structure back into her life. It’s made a world of difference not only for her but our entire family. It reinstilled her confidence and renewed my hope in her being able to attain an education and a sense of fulfillment. Her trauma can be a source of learning and not an impediment to her growth.

For me, the nightmares don’t go away. I’ll never feel comfortable sitting with my back to a room full of strangers. I’ll never stop worrying that the horrors that befell me might befall my own children. Yet I know that they can not only survive but thrive, not in spite of, but possibly because of those challenges and have a deeper sense of kindness to show from their scars.