[This is my post for Blogging Against Disablism Day. I will also have a post on my poetry blog, once I get around to rounding up all the poems I’m going to put in that post.]
I reach out for my body. It’s an instinct, all young ones must have it. But instead of feeling hands and feet, I feel a blast of burning pain, like stepping into an oven. I retreat back to the murky ocean I float in all the time. The pain is off somewhere distant, but so is my body. “Thoughtful” is a word I hear used a lot, when I stare off into space disconnected from my body.
Later, psychiatrists will call it severe dissociation. They will diagnose me with dissociative disorder, not otherwise specified (DD-NOS). They will talk about a ‘biological predisposition to dissociate’. Even when the extent of pain I am in comes to light, they have trouble seeing the dissociation as a symptom of severe pain, rather than a thing in its own right.
Dissociation got me through 20 years of severe pain. 20 years in which by all rights I should’ve been curled up in a ball doing nothing, yet I was active, I was doing things, I was going to school, I was climbing trees. I didn’t know this was severe pain, I thought it was just another feature of the world. Trees have bark and my skin burns, the sun shines and my skin burns, the sky is blue and my skin burns.
Now they say my mother has small fiber sensory neuropathy, that maybe I was born this way, inherited from her, however our nerves got like this. It responds to Neurontin, and Lyrica, and Trileptal. It acts neuropathic, it acts like central pain, nobody knows which is which for me.
This is a shout-out to all the kids — all the kids living with so much severe pain you wouldn’t believe it yourselves, because it is your normal. And you go on trying to do normal stuff. And sometimes you can’t. Sometimes the pain just grips hold and you have no means to deal with it. But you don’t know you’re in pain, so you push against it, and you think you’re weak, everyone else can do this, why not you?
Why not you? Because you’re in severe pain and you don’t even know it. You may not even recognize it as pain, because pain is such a broad and nebulous category.
My heart goes out to every single one of you. All of us who are going through this now, as children. All of us who survived and made it to adulthood and now know how much pain we were in, and wonder how we got through it. All of us whose pain is being treated as DD-NOS or another psychiatric disorder, because all people can see is our emotional responses to pain, not the pain itself. All of us who are told ridiculous things like “You have pain that gets less on Neurontin? The pain must be part of a seizure.” All of us who are told that if we were really in pain we wouldn’t be able to do what we do now… they throw our expert coping mechanisms back in our faces, and want us to see pain psychologists who will teach us everything we already know about how to manage pain.
Everyone in this situation — I am thinking of you tonight. Together we form a whole constellation of pain, burning bright. And however well or badly we are dealing with the pain right now, we are people who are surviving.
(Ugh: Doctors. As usual, BADD posts are going to leave me wanting to punch more than a few, I’m sure.)
This post is so relate-able and meaningful. The thing about chronic pain, and how normal it feels to you, is that you DO start to second guess and doubt yourself, because it can’t be THAT bad, right? (especially when you’re young, and especially when you’re trying to compare yourself to others.)
So, yes: everything you’ve said about surviving and being strong and just knowing that someone else gets it. All vital.
This is a great post. I can’t imagine what it must be like to live in severe pain, but it must be horrible having this misinterpreted as a psychiatric disorder. I get my sensory issues misinterpreted as psychiatric symptoms, and that’s bad, but I imagine the pain I get from these issues isn’t nearly as bad as what you and countless others experience. Thank you for raising awareness (you may not like that word, but I couldn’t come up with an alternative).
I have never really felt physical pain but your metaphor，“a whole constellation of pain,” seems so appropriate for depicting the connection between souls suffering in silence. Your writing is inspiring. It makes me want to write more!
I can’t imagine living with severe pain. I just hope and pray that all those kids who are experiencing those kinds of pain would have strength to endure the pains.
I am a suffer of severe chronic pain. it started in my early 30’s (I’m now 46) due to multiple ailments that all coalesced around the same time.. radiculopathy from my severe early onset degenerative disc disease and diabetic neuropathy.. all of course aggravated by my weight gain from my hypothyroidism… I take 220mg of morphine a day, just to have somewhat of a form of a “normal” life… I tried Neurontin, Lyrica, and all of those but sadly, they did not help due to the severity of my condition…
thank you. I feel for anyone who suffers from any forms of regular pain. I know it. I do have some relief thankfully but it’s a double edged sword. hopefully recent trials with a non-addictive morphine alternative that has worked in rats will come to some fruition in the near future and I can stop being a slave to my meds (tho thankfully, they no longer get me high.. they just numb the nerves, so I can live with the med diminished pain).
all my love to you and to all with our plight. Much Love.
Sorry for not getting back to you, and other people, and in general not getting people’s comments approved, and stuff. I’ve had a lot of problems with inertia that have made working on this blog very difficult. Thanks to everyone who has sent comments.
Also when a comment seems more like a personal email than a blog comment, I don’t publish it, but I don’t always reply, either. (Right now I’m not even regularly in touch with my closest friends, so don’t take my non-replying or late approving of comments personally, either.)
Anyway I hope that medication is working. Lyrics/Neurontin only work for certain kinds of pain, and have been over-promoted for kinds of pain they were never intended to treat. I’m lucky in that they do work very well for my neuropathy.