I live with a body that hurts, that has failings; a body which does not unfold in the morning, which creaks, which swells, which pulses. I don’t know what it’s like to not be in pain. It’s part of the obvious: I have curly hair, I’m punctual, I’m in pain. Pills to swallow every day, global, constant fatigue, because my body has to work harder than others to accomplish the same things. Regular medical appointments, thousands of dollars in osteopathy, physiotherapy, acupuncture, watching my diet, paying attention to physical exercise (no longer being allowed to run, no longer being allowed to play sports at high intensity), and sometimes, when I talk about it during a conversation, a surprise: “Ah, I didn’t know. »
Getting the diagnosis was a journey I wouldn’t wish on anyone. For three or four years, maybe more, on several occasions, I begged the general practitioner whom I saw at the clinic of the university which I attended then to give me a reference in rheumatology. Telling him that I had crying spells sometimes, the pain was so acute, didn’t change anything. Several members of my maternal family had autoimmune diseases and I suffered from related problems. When I finally changed my strategy and a doctor from a random clinic agreed to become my family doctor, it also took him two or three appointments and several tests, but he agreed to give me this reference. The rheumatologist immediately took me seriously. I had a treatment plan immediately.
I thought about phoning this UdeM doctor to find out: what, exactly, about me led her to think that I was fantasizing? Did I not insist enough? Or was it because, as numerous studies prove, black women’s health issues are not taken seriously? Would she be able to apologize, acknowledge her mistake, see how it had affected my quality of life? Apparently I have the type of illness where the more attacks you have, the more likely you become to have more. The organs get used to the pain, craving more — if I had been treated earlier, I might be in less pain today. The fact that my request was not heard worsened my health condition while participating in the clogging of the system, because I had to knock on many doors before they agreed to help me.
However, I consider myself lucky: my illness does not endanger my life, it is almost invisible. Since my medication controls the disease but does not cure it because I have a chronic condition, since I sometimes have difficulty walking in the morning and see my limbs stiffening more and more, wondering what he will be in 10 or 20 years when I am not even 35, I am more sensitive than ever to what is happening in other people’s bodies and to the ways in which they are taken care of. I could not be more convinced that the health of the body is political, and that the ways in which access to care is regulated and sometimes prevented are just as much.
I was affected like everyone else, recently, by the death of this young girl, Amélie Champagne, whose chance to come from a hyperprivileged environment (she is the daughter of the CEO of Jean Coutu) does not was not protected from the worst: suffering from Lyme disease in a system unable to take care of her symptoms, she tragically took her own life. I remembered the movie Unrest (2017), by Jennifer Brea, seen recently, where the filmmaker deals with chronic fatigue syndrome, completely understudied, despite the immense distress of the people who suffer from it, many of whom also rely on suicide. Because it is not only to say that one has pain, which is necessary, it is also that this pain can be received without being called into doubt. Pain is not a whim, it grabs hold of the throat, colors everyday life, overshadows all joys. She asks only to be heard.