“Get Well Soon” vs. “Have you tried…?”

I’ve written in the past about my emotions before, and the shame of disability. I’ve written about how working with this disease is personal shadow work. What I have’t written about is how the shadow of chronic illness, chronic pain, and disability impact healthy people.

How healthy people’s unwillingness to sit with their own discomfort – their own fears and shadows – can hurt people like me.

A few topical examples of disability in the shadow?

  • Opioid restrictions make life even harder for chronic pain patients – for whom none of the other treatments work.
  • Canada says “we have healthcare, come here” … but doesn’t accept disabled immigrants.
  • The healthcare battles in congress that threaten to make chronic conditions even more expensive.

This is the tip of the iceberg.  ADA revisions are being considered by congress that put the onus of reporting and dealing with non-compliance of laws on the disabled person, and not on the companies and employers in question.  (This one goes back to corporate rights vs. human rights, IMHO).

I need to stop or that’s all this post will be.

“Get Well Soon!”

Sometimes I post about my pain on social media. Or, embarrassed, I say something about it to the Lyft driver when I ask them to drive to where I’m standing instead of walking across a parking lot to meet them.  More often than not, the knee-jerk response that the we all have to the ill is “Get well soon!”

To the chronically ill? That response is a punch in the gut.

I’m never going to get well.

I’m going to have good days, and better days, and then I’m going to have really bad days.  I might find the right combination of medicine from East and West and maybe a new dance move that helps and my psoriatic arthritis will go into remission.

You know what remission isn’t? Cured.

Remission would mean that if I get stressed out about a deadline, or paying the bills, or fear of imminent nuclear war, I can have a flare up.

Remission means that my rheumotologist can stop checking my joints for permanent damage and disfigurement every 6 weeks.

But I’m not anywhere near remission. I’m living and breathing this pain and this disease every moment of every day.  It means my ankles are unreliable, and my wrists more so. That I can’t text easily, and I often don’t have the grip strength to do things like brew coffee or hold my phone for very long. It means that I have a complex relationship with the 0-10 pain scale when determining how my day is, and it is never, ever a zero anymore.

If you’re looking for a response that isn’t quite so painful, “I hope you get some relief” is way better for people like me.

What to Consider Instead of Fixing

Twitter user @AnaMardoll posted a very long thread last week that is worth reading every word of.  Her rant is primarily around the unsolicited and well-meaning advice she gets from all quarters whenever she talks about her disease.  And the overwhelming feeling that when people are offering this advice, it’s tinged with a feeling that we spoonies are some how not doing enough – not being righteous enough, experimental enough, intellectually curious enough to figure out the fix on our own.

But if you don’t have the time, here’s the part that I’m still chewing on:

So, I’d like to ask you, dear reader, this question. How uncomfortable does it make you to think that I’m staring down an illness that I’ll be dealing with for the rest of my life?

This is where the shadow work comes in.

This is where you get squirmy feelings in your belly and want to click this tab closed and run away from this thought.

Ana and I are shining the flashlight on a creepy cobweb covered fear in your brain, and it’s awful.

But we need more people to sit with that oogey feeling for us. With us.

Why? Because it will help more people empathize with the news items I put at the top of this post, and help motivate you to act on it.  If you’re like me, you might not notice wheelchair ramps until you need one.

IMG_2393 (1)

Last month, I wrote a letter to a hotel where I’d stayed in the wheelchair accessible room. Having a little bench in the shower was sheer heaven – it saves so much energy, and makes showers relaxing again.  I was so relieved and delighted to have a bench, I literally took a photo of it to show my husband.  But I had to stand up to reach the shampoo and soap dispenser (they would be past the left edge of the frame in this photo).

It takes deep levels of empathy to see past just the check boxes of the roll-in shower and the bench.  Someone has to sit on that bench and think through needing the soap in the dispenser before they drill into the wall.   And in order to do that? That contractor holding the drill would have had to dig into that oogey, cobwebby awful part of the brain that thinks “what if this were me?” and then place the dispenser closer to the bench, further down the wall – maybe in a less aesthetic, but more functional place.

Sitting with the yuckiness will help that discomfort that you feel when there is nothing you can do to fix my pain except witness it.  It will help you understand the mental and emotional steps I’ve had to take on this journey, realizing that this is my new normal.

Tank.

At the core of my identity, my self-concept includes general “healthiness”. It includes endurance. Cycling. Running. Walking everywhere. Hiking. Backpacking. Yoga. Duathlons.  When I was a kid it was horseback riding, cycling, and walking everywhere.

I can’t walk around the grocery store without sitting down.  I can’t do a downward-facing dog pose without my wrists crumpling and landing on my nose. My ankles are too wobbly and painful for Tai Chi. I can’t take a shower without a fucking bench, because I get too tired just washing my hair.

My AT trailname is Tank. I earned and chose to keep that name because it’s exactly what I do when I’m looking up a big up and still sweating from the last one.  If I’ve got to slow down, I slow down. (I’m always the slowest of any group.)  If I need to pause between every five steps to breathe,  I pause. I tighten my hip-strap to ease the weight on my shoulders, and I squint up into the gloom to see how far this up really is.

But I don’t stop. I don’t give up. I chew on a shot blok when I start to swear, and I drink a ton of water from the camelbak bite nozzle on my shoulder.  I bitch and complain. I talk to the mountain and tell it what a massive jerk it is.  And then at the top, I sit the fuck down and breathe.  Then I get back up and keep going down the trail.  As my friend Choir Girl put it “You rumble along and sometimes slow down, but you never stop, and nothing stops you for very long.”

I’m sobbing.

This disease can take away my big ups and my AT miles. But it can’t take away the stubbornness that keeps me moving. It can’t make me stop. I will slow down until I’m at a snail’s pace. But it can’t make me stop.  I’m going to tell PsA what a massive jerk it is. I’m going to sit on this log and catch my breath, and then I’m going to keep going.

 

One thought on ““Get Well Soon” vs. “Have you tried…?”

  1. Pingback: 2017 buried deep grace under the sorrow | Alicia K. Anderson

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s