A few months into seeing my new therapist, I am talking about the anxiety I experience when taking public transportation. For me, part of that anxiety is that my physical disability might cause me to overheat and faint while out and about. She stops me and asks what triggers the fainting. I tell her. Again.
I try to make the explanation brief, because I know she’s heard it before. I don’t want to talk about the fainting. I want to talk coping strategies. I want a plan. I always want a plan.
I am also exhausted, both physically and emotionally. I have barely slept, and my fatigue is so bone-deep that I have to prop my arms and head on my desk in order to stay upright. My lower back is a band of agony. I am struggling to formulate a sentence. I’ve had too much nausea to be able to eat, so I can’t take any painkillers yet. I say, “Sorry, I need a minute ― I’m tired and in pain and it’s slowing me down a bit.”
And then, suddenly, my session is over. We have spent almost 50 minutes talking about my chronic pain. Again.
To an outside observer who’s never experienced hypermobile Ehlers-Danlos syndrome, my condition sounds appalling. I can dislocate joints by shifting in my chair just so, or reaching for a glass of water, or (my favorite) opening my mouth to talk. I can faint if I get up too fast, or if I’ve been in the same position for too long, or if there’s a storm coming. I respect you all too much to describe what it does to my digestive tract, but it’s not pretty. I bruise like a peach. My muscles work overtime to compensate for the string cheese and chewed-up gum I have in place of ligaments, so they tire out in a fraction of the time it takes for an average person. I’m like if Mister Fantastic lost his powers mid-stretch. I get it.
To me, this is banal. I know how to reset my joints, and when to ask an emergency doctor to do it for me. I keep oral rehydration salts in my bag for the fainting. I pace myself.
OK, that’s a lie. I know I’m supposed to pace myself, and I know I have only myself to blame when I’ve overdone it and I’m a bed-bound rag doll who stares at the ceiling and curses God. It’s my life. It’s a horror show, but at this point it’s the most normal horror show in the world. I’m used to it. Human beings are remarkably adaptable.
Yet my disability follows me through life like an anxious cat ― an extra body in every conversation, inarticulate, demanding attention, hissing and scratching whenever someone else tries to examine it. When I was still able to attend therapy sessions in person ― before my difficulties with travel forced us to switch to Skype ― I did so with visible mobility aids. I don’t get to leave it at the door, ever. But that doesn’t mean I always want to talk about it, even if I lose my train of thought and say “I’m so tired” instead of finishing my sentence, or if I have to stop for a second and put my hip back in its socket.
I invite you to imagine that there is a loose board in your floor that your landlord can’t or won’t fix. Every time you step on this board, you pratfall face-first onto the floor and lie prone for a couple of minutes, counting the little cartoon birds as they fly around your head. Then you get up, dust yourself off and carry on with your day. Imagine this happens most days, and there’s nothing much you can do except shrug it off and try to avoid that section of floor.
Imagine the first time you tell your therapist about it. It’s been happening for years and it’s definitely still annoying, but it’s almost funny to you by now. Your therapist, though, is appalled. How could your landlord not do anything about this? Don’t they know how dangerous it is? Surely there must be someone else you could appeal to!
And you patiently explain: The landlord doesn’t understand where the problem comes from. They know it’s dangerous, but either they can’t fix it or they don’t care. There’s no one around who knows any more about this type of floorboard than your landlord does, so you’re kind of stuck with it ― all you can do is work around it or with it.
Now, imagine having this same conversation at least once every two weeks. Imagine it takes up at least half of every therapy session, even when you’ve had a painful breakup or lost your job or had a terrible fight with your mother. Imagine spending every other session fielding your therapist’s shock, outrage, even pity.
Imagine feeling like your therapist pities you.
This isn’t to say that discussing my disability during a therapy session is never productive. Sometimes, it’s vital. Sometimes, my therapist sees me over Skype, my head in my hands, the skin around my eyes dark, my brow furrowed with pain, my words a fatigued staccato, and she will ask me if the situation I’m describing is worse because of how tired and in pain I am. Those are the times I most need perspective, and I’m grateful for it. I’d never dream of barring my condition from my therapy sessions, even if it didn’t slink through the door behind me anyway.
It feels like I’m talking about disability constantly, everywhere ― often enough, out of choice.
I spend a lot of my time educating people about it. I run a business where I patiently teach cultural and third-sector organizations to treat their disabled employees like human beings. I write about it. I make art about it.
I also have to advocate for myself and others like me constantly, to explain my struggles to people who have no business knowing about them, to justify my continued existence to those with the power to cut off my access to essential health care and finances. This is a struggle common to nearly all marginalized people in one way or another, and it is utterly exhausting. I need a space where, just once in a while, I can cut to something else that’s on my mind.
I do not need to spend every therapy session listing my ailments. I have physicians for that. I do not need to exhaustively describe what it’s like to gradually dislocate my lower spine over the course of three hours. I do not need to repeat, time after time, that some of my symptoms are so random as to be unmanageable. To list my triggers for sensory overload, and narrate the experience. To explain the U.K.’s Kafkaesque social security system and the barriers I face when I try to seek support.
Because, after a while, it doesn’t feel like I’m saying these things to progress my treatment. My words don’t seem to have any lasting impact. I start to get the impression that this person who is supposed to be helping me get well is treating me as a teachable moment ― or, worse, viewing me through the same lens of pity porn as any stranger in the street who asks me what I’ve done to my leg.
I need someone to hear that I am in pain ― any pain. I need someone to hear that today, exhaustion has infused my muscles with mercury, that I am maddened and mired in it. I need someone to hear my fear that I may never have a career or a stable relationship because neither an employer nor a lover is willing to look past my walking cane. My frustration at still being dependent on my parents at the age of 32. My rage at being persistently overlooked and misunderstood. My grief at the life I always believed I could have, that my illnesses have taken from me.
I need someone who can help me be realistic ― to work within the limitations I have, rather than railing against them. I need someone to help guide me toward a life that an ambitious workaholic like me can feel proud to live. To help me redefine my value. To shift the focus of my self-worth away from productivity and toward something different ― something more achievable, and perhaps more worthwhile.
I need someone to hear my joy at persisting, to bear witness to those fleeting moments of delight that seem all the more precious for their power to break through the pain barrier. I need someone to take note of the times I have felt loved and worthy, and to remind me, when the darkness falls, that I have lived them before and I will have them again.
Like most people who are in therapy, I need someone to help me make sense of my life.
I’d love to see a therapist who has lived experience of disability, but they are rare and hard to find. Rarer still are affordable therapists who understand disability, LGBTQ issues and my specific mental illness. So I base my choices on other goals ― on becoming less afraid of men; on establishing proper boundaries with older women; on navigating my debilitating social anxiety; on finally (maybe) understanding my gender identity.
And, meanwhile, I explain my disability, over and over and over again.
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