You are not owed representation

Recently, I have been reading about Ehlers Danlos Symdrome. Specifically researching about why it is harder to see people of colour with EDS. Why it is harder for people of colour to get diagnosed with the same. Think of it as an investigative fixation. During this research of mine, I had come across a comment by someone. It read- I am paraphrasing here -like this:

My doctor believes that this well known “black” celebrity had EDS. -lists reasons why said doctor believes so, aka symptoms-. It was a great opportunity to spread awareness about this condition that is not well known. This potential ambassador for EDS that dropped the ball in educating all the races on hyper mobility disorders including his own - reveals the name of the celebrity-.

I was uncomfortable reading this. Especially deeply uncomfortable because of how exposed I have been feeling about my own body. It is my own doing. I practice radical vulnerability for people do not just know. They need to be told, explained, made to understand in a way that is unambiguously comprehensible. Vulnerability becomes a necessity in this case. It is cruel, but, it is what it is. Even then, it doesn’t stipulate their understanding or their empathy.

Radical vulnerability doesn't mean I share everything about my body. I share what I am comfortable sharing, something I make known when I am sharing. Because no one is owed my vulnerability. You get from me what I am willing to give. The same applies for everyone. We get from them what they have the capacity to give.

Representation matters. Seeing oneself in another, in mainstream media- doing things, achieving things, living -matters. We need anchor points in the world. Something that lets us believe that we are permitted to be… more. Someone that lets us believe that we can live. That it gets better. Not wholly, but it does.

I struggled with that when I didn’t see anyone with achalasia openly talk about achalasia. Or didn’t see people talking about back pain and headaches and this muscle aches that just last for days. Or sensitive joints, or a persistent haze in the eye, this ache in the back of my eyes and the sides. This sensitivity in my nose, my throat that’s always a little itchy. My chest, it aches. Shock like pain. The joints in my feet hurt. It hurts so much in the morning. It’s hard to sleep in the night. Does it hurt everyone like this? Or just… there are too many symptoms to list. Too many questions to ask. It is painful. Far more than I can convey. It is especially worse when I read disability representation done badly in stories. We talk more about cancer than we ever talk about chronic illness, mobility, depression that comes because of the uncertainty that accompanies illness. Anger over a body that isn’t working the way it’s supposed to. Fear for a thing that is unknown and never will be till you live it. Grief for a thing that you were, but you never will be again. We see so much about illness related to aging, but so little about young people in pain, living with illness, coping with illness. Death and aging is so much easier to understand, fear, be angry about. However, what about living loss? How can you accept that? How can you accept any of it?

All of these things that we feel on a viscerally deep level, it is terrifying. Feeling symptoms, doctors not believing you, then finally believing you, the nurses chittering about how you are younger than them right outside thinking you cannot hear them. The doctors refusing to give stronger medications because you are too young. Doctors telling you that your pain is due to general inactivity but you walk and do yoga and lift weights and do resistance training. Not at the same time thoug, it is alternated over the course of a month with rest days. My body cannot sustain too much exercise. But exercise makes it feel better. But only a certain amount and that amount changes everyday. It is hard to explain. Doctors tell you that you are overweight but 50kgs is unsustainable. You know that because you have been there. Your body hates it there. Doctors ask you why aren’t you doing a sport instead of exercise. IT HURTS! Your reports coming back normal but you are still in pain. Doctors say maybe it’s PMS, maybe it’s anxiety and depression. I am depressed, I am anxious. Wouldn’t you be when you are in so much pain, unsure if you can walk that short distance of your bed to your kitchen? Wouldn’t you be because you don’t know what your body will be like the next moment? If all your reports are normal then are you imagining the pain? You cannot be. It’s real, I promise it’s real. I am not faking. I am not making it up. It hurts. It hurts to breathe. I cannot see half the time. My hands hurt, my feet, my knees, my hips. Everything clicks. My ribs are sensitive, it hurts to touch them. It hurts when someone else touches them. I have a headache, all the bloody time. It hurts, it hurts, it hurts, it hurts. I promise I am not lying.

I walk, but in a lot of pain. I breathe, but in a lot of pain. I think, but through a thick haze. I talk, mumble, forget things halfway through. It’s hazy, it’s painful. I do these things, but I am in a lot of pain. It is tiring to tell people that I am in pain. It is tiring to explain to people how it is that I am in pain. It is tiring to remind people the chronic illnesses I have. To repeat to the same people those chronic illnesses and what they do to my body. Exhausting to explain that even though I have had surgery, take medicines, I am not cured. I might never be. I have to explain this to even doctors, tell them that it still hurts. How come though for they have hacked at the part that hurts, they have fixed it, how dare I be an unruly body that is nor fixed! It is a cycle. We do it over and over and over again, the explaining I mean. For just as I am not obligated to be vulnerable, you are not obligated to remember. Or think of me as disabled and/or chronically ill. And what of the relationships around us? What about family, friends, acquaintances? Do they live in a silo? Of course not. They are navigating their own form of intersectionalities. Their understanding of the world, of the power dynamics in the world. Their understanding of ability, disability, mobility, illness, wellness, health. They are navigating the politics around the body along with emotions that are entangled in that relationships. We are all just negotiating bodies.

It is hard to talk about all of this. Harder to educate. Harder even to be this vulnerable about pain in a culture that has taught us to stuff our feelings deep in a box and forget them. A culture that has taught us to feel good about being able to do things, overachieve, compete. The same culture that has taught us to hide our inabilities, illnesses, the darknesses in our minds. It is hard to navigate people’s understanding of disability which is far more one dimensional than we assume. No two people who have the same and/or same combination of illnesses will experience it or present it the exact same way. Neither will the illness progress the exact same way. While I am ill, I am still doing things that are not typically associated with illness. It is hard to comprehend that. I understand. But It is not easy on my soul to be understanding of that. Nor is it easy on my soul to educate.

You are not owed representation in the way you want it. You will get representation the way the person exepriences it. In the way they are comfortable talking about it. We all deserve silence during these times in which we negotiate our bodies through the web of intersectionalities. No one is dropping the ball on educating the masses. We are all trying our hardest in our own ways. Educating in our own ways. And that is fine.

Your pain to be seen and see yourself in someone else is as valid as someone else’s pain to live it in silence for they already have to much on their plate. Representation matters, but so does someone else’s need to be sane for this is burnt out inducing work. We need to acknowledge that.