Something I have been dealing with for a very long time is the critical impact of marginalization and dehumanization of a patient in the modern practice of medicine. On a surface level, Doctors need to take away the factors of an individual’s life in order to perform their job when they need to diagnose and prescribe medicine but more often than not this leads to a complete lack of empathy and respect for the patient and their experiences. The patient becomes a piece of a statistic, another number in a chart. They become the best fitting description and are plopped into that category haphazardly, all risks of misdiagnosis set aside. The patient no longer becomes a person experiencing an ailment but a problem to be solved, and they lose a sense of humanity. It is no longer important to shed that insight to find the true cause of the problem because it is too difficult to find! We don’t have access to the resources to diagnose easily, we don’t have access to the resources to properly improve our healthcare system…. yet here we stand as patients ourselves, trapped within a system of impoverished information that leads to the over categorization of an individual’s experience.Now, some Doctors go so far as to be set in what they know, and from that our experiences as patients are meaningless. Those Doctors instill anxiety in their patients which in turn manifests as new medical problems, and so the cycle begins. We become trapped by the attitude of our medical worker; happy helpful individual’s give you hope, while those who doubt your experience provide a basis for fearing the medical field in general.
The fear of not being taken seriously leaves you raw and angry when the Doctor brushes your worries or pains aside, and you are left feeling ashamed and scared of sharing your state of affairs with anyone; if the professionals won’t take you seriously, who will? For those with chronic illnesses, or those undergoing diagnostic procedures that feeling can leave you terrified and isolated. When the Doctor does not listen to your lived experience because it doesn’t match what this statistic says or that text states it to be it feels like you are somehow no longer important as a human, as an individual; it feels like the Doctor thinks that you no longer have the right to be experiencing what you are experiencing because you don’t fit the grid. Unfortunately, those precious stats are created because people have problems and enough of them exist to coalesce into a pattern, not the other way around. It almost seems as though the label you are given ends up meaning more than the experiences you go through in your day to day life. As if you giving your best isn’t good enough because it isn’t producing their results. You feel trapped not only by your chronic illness but by the people around you, society itself. You cannot perform to the standards set by the so-called higher power and for that you are marginalized and with little respect. You lose value. You become less.
This morning I finally went in to my Doctor to apply for the Access Service at my university as well as ODSP (Ontario Disability Support Program) and my feelings are very raw still because it did not go well. After a year of treating me for Fibromyalgia she questioned the diagnosis. I had been diagnosed by a different Doctor last summer because she was on Maternity leave, and there had been no question there, and she never questioned to medicate me… but when it came to social assistance I had to prove that this was my last resort by having a small emotional break down in front of her because she questioned the diagnosis. She conceded at the end on writing Fibromyalgia on my school form (it had been on last year’s) after I explained teary eyed and panicked that I have anxiety with Doctors and diagnoses as well as Doctors taking me seriously after my old family Doctor and my entire family spent the first 20 years of my life saying everything was in my head– I was diagnosed with very bad case of Celiac disease at the age of 20 after switching doctors. I explained how hard it was to have social interactions in general because of my celiac and fibro. My migraine medication and fibro medication combined make me linguistically incompetent orally so I am either constantly in pain or not socially capable to function in a job setting. I haven’t felt so horrible before… It was bad enough spending years of my life not knowing what was wrong with me, being patient X, then being given a life long sentence of fibromyalgia (which I can manage for school– just not school and work), but then I had to be told I was potentially led astray, when I still feel and experience everything every single day.
I have not felt so dehumanized and isolated in a single instance, so easily. Cast aside like a piece of dust on the wall. “Oh, you’re quality of life can’t be that bad! You’re only 22″ Is all I was feeling in that conversation, whether that is what she thought or felt or not.
PS. This is also happening after I had an unexpected Celiac reaction on Saturday Evening (when I had one on Wednesday) so it was painful enough that I was screaming and whimpering uncontrollably for over an hour at the worst parts and am still in quite a lot of pain from it….