Young, Disabled & Laughable: An open letter to all the doctors who see my bodymind as an impossibility
By Sav Schlauderaff
What is so funny about a bodymind in pain?
This question has been sitting with me lately when reflecting back on this last semester & the doctor appointments that have truly determined my feelings.
Left to wonder who would possibly be comforted by a medical professional laughing while explaining your own symptoms back to you.
Your heart rate just jumped up to 150! How funny is that!
That while the reality of my bodymind might be shocking or a surprise or not normal for my age….is that funny? Is my pain funny?
Or do you just feel uncomfortable by my bodymind?
Uncomfortable from the incorrectness of your assumptions made based on your visual outward assessment of me.
That no, it’s not because I’m a “slender woman” (insert me screaming), or stress, or too much coffee. It’s not me being paranoid. It’s not me coming in to waste your time or lie.
I wonder if my chest, joint, and facial pain had been taken seriously years earlier if anything would be different. I wonder if the number of bones that were consistently out of place in my body were assessed holistically or if the question of “why does this keep happening” was asked if I would be in less pain. If the nurse in elementary school, middle school, high school had taken my pain seriously. If I wasn’t laughed at the first time I had an aura migraine that made me lose my vision and speech. If I were able to have follow up care after having extreme swelling and bruising for over a month after my wisdom teeth were removed. etc etc etc you get it. This is about access to medical care in multiple capacities, about accessibility in a monetary, physical, mental and emotional sense. That if you have coverage to see a doctor it doesn’t equate to having the spoons, the time, the transportation. It doesn’t equate to assurance that your provider won’t be ableist or transphobic, or homophobic or racist or fatphobic or sexist or classist and so on. We need to expand and explode our definition of accessibility to think about the patient as a whole and not as a symptom.
And it’s more than laughing at my unexpected lab results, it’s the eyerolls, the chuckles, the impatient mm-hmms when I’m explaining my reality. That once I get past a certain number of symptoms and feelings that my bodymind is feeling, I’m suddenly too much. Taking up too much time, too much energy, too much space on the fucking chart.
Our chronically ill bodyminds don’t fit within these rigid categories, and don’t have clear answers or a clear trajectory towards “health”and in fact “health” is an impossibility for so many of us.
But that inability to easily fit doesn’t make my experiences not real and my pain less painful.
Much like my frustrations around trauma, aka the T in PTSD stands for trauma so maybe don’t bluntly ask me about it, the chronic in chronic illness or chronic disabilities means that it is ongoing, recurring, persistent, long-term, constant, you can get the point here.
That it becomes so tiring on top of my ever-present fatigue to have to explain that yes I am always sick, always in pain, always exhausted.
Yes, I know my score on the depression form is high, it always is. Hi, I have depression.
I feel like my body is falling apart and no one is doing anything to help aside from laughing at the absurdity of it. And again, what is so funny about a bodymind in pain?
But also, this isn’t only for my doctor friends, this is for administration, for my bosses, for my professors who interrogate my health, who expectantly stare and wait for me to disclose, who feel it is 100% alright for them to ask in front of the entire class “What happened? Why are you using a cane??”, who believe students are using mental disabilities to “excuse bad behavior,” that students with mental disabilities will cause too much drama, that refuse to provide the legally required accommodations outlined in accommodation letters, who all too often assume there is no one disabled in the class or in the room. This is for my classmates you become silent every time I talk about disability. Who scan my body and my words to figure out what I have. Who “couldn’t imagine” living like me.
This is a letter to tell you to stop pawning me off.
To a therapist, to disability resources, to a different doctor.
To understand how intertwined our bodyminds are. How linked PTSD is to chronic illnesses and to pain.
To understand that we can perceive your discomfort with our sick bodyminds.
I know most of y’all have taken an active listening training so please, just listen.
This is a letter to instruct you to take 15 minutes to truly reflect on your feelings and thoughts about disability. To write out your own experiences with disability and illness. How does that make you feel? Like TRULY feel. Don’t write out what you think to be the “right” answer. What have you internalized? How is your ableism also intertwined with (y)our classism, racism, fatphobia, ageism and sexism? What is it about a sick bodymind that makes you uncomfortable? That you have been conditioned to feel discomfort around?
What is so funny about a bodymind in pain?