health information, diagnosis & medical gaslighting

why are we discouraged from empowering ourselves with accessible health information?

i am excited to be writing a blog about illness for many reasons but one in particular is that blogs were there for me at a time when doctors were not. 

it was 2012 and i had a lot of symptoms and not a lot of answers. i didn’t have an iphone and disability justice wasn’t a part of my vocabulary. i had already been going doctor to doctor, most of whom told me i was a “healthy young lady” minutes after i described my chronic pain and difficulties walking. i was in one of those nine month waiting periods between specialists and i took to the blog-o-sphere, reading anything i could find on chronic illness, injury recovery and autoimmune disease. there were millions of people online who had in one way or another became sick or chronically injured. most of the blogs were food blogs, anti-inflammatory, paleo, anticandida, lifestyle, and therapy blogs. most of the people were decades older than i was and already had had careers, had financial stability and resources. i was 20 years old, trying to stay in school, and experiencing intense daily chronic pain. these blogs were a lifeline. 

in university i took a class on rhetoric of science, medicine and technology. we talked about health information and the role of the internet. the “stress scrolling” that is common for undiagnosed patients trying to find all the answers on Web MD (been there!). now that health information is available online, we as patients are able to access research on any type or illness or any type of treatment. yet we are not able to access the context of a physician, the context of having been to medical school and having seen hundreds of cases, that informs a thorough diagnosis. it’s incredible how many conditions have a list of symptoms similar to this: 

• fatigue 

• chronic pain 

• insomnia 

• inflammation

• stiffness

• headache

yet, when physician after physician chooses not to give you any information or even proper testing, what else are you to do but scroll the internet looking for answers? 

after ten years of trying to solve all these puzzles, i am still surprised that the default for doctors is to refuse the patient useful health information, tests, and treatment options. if they cannot immediately identify an issue, they often resort to saying that there is no issue. they simply say that you are fine and should come back in a year if you are still in pain. this is medical gaslighting, a form of abuse which makes you doubt your perception of your own body. i am not the only one who has experienced this. 

Medical gaslighting disproportionately affects racialized low-income people. It is based in the western medical framework of eugenics, the attempt to eradicate abnormalities and people deemed ‘not normal’, and misogyny, the subjugation fo women. This framework grows from European systems of feudalism, colonialism, and paternalism and forms the foundation of the western practice of medicine. medical gaslighting becomes a tool which identifies a physical complaint as a mental illness, thus allowing the prescription of psychiatric drugs such as anti-depressants. An example is the condition formally known as ‘hysteria’, a form of diagnosis to label women as hysterical and mentally ill, which has now been renamed as conversation disorder, which describes a mental condition which causes a physical condition that cannot be explained by medical evaluation. This condition is commonly diagnosed to women with chronic pain.

a doctor of course does not want to mislead a patient and so they don’t give a diagnosis that they are not 100% certain about. the problem is that the doctor, even if they want to give a patient their full attention, rarely have enough time to sit with a patient long enough to really have a clear idea of their case history. in canada, specialists often see 50 000 patients a year and an average appointment is 15 minutes. the system functions in a way that contradicts the functionality of the system. 

the issue for my condition, and many others, is that my arthritis only shows up on tests once it has damaged my bones. the progression of the disease can be slowed, however the doctors needed absolute proof that there is in fact damage, before giving me any information on chronic illness, arthritis, autoimmune disease, or chronic pain science in general. Yet access to some simple generalized health information could have slowed or even prevented the fusion of my joints in my lower spine. 

after spending several years convincing two different specialists that i should get an MRI on my back, i finally got one and was diagnosed with ankylosing spondylitis at the age of 24. over night, doctors went from recommending mindfulness and anti-depressants to me, to telling me i have a rare incurable life-long degenerative autoimmune disease and put me on intense immunosuppressant live-protein injections with severe side-effects. still I was denied more imaging to look at what was occurring in the rest of my spine. two years later in another province with another rheumatologist I was given further imaging which revealed scoliosis (a crooked spine) and more extensive damage than originally thought. 

western medicine functions on the premise that diagnosis is necessary for treatment. this creates a gap of treatment for people who are difficult to diagnose, have been misdiagnosed, and are being denied diagnosis due to bias, lack of access or barriers to healthcare such as immigration status. Misdiagnosis is a serious issue and often complicates the process of getting care, as some diagnosis such as fibromyalgia become a scapegoat for further testing. With this foundational premise, you’d think proper testing would be at the centre of the western medical system, but the system continuously creates barriers for folks to access tests.

despite this emphasis, I’ve had doctors prescribe me pharmaceuticals for conditions that I have not officially been diagnosed with. Depression, for example, has been linked to chronic pain, so even though I have never been diagnosed with depression by a psychiatrist, specialists are quick to write up anti-depressants in a first appointment with a chronic pain patient. 

So why did it take me one appointment to receive a prescription for anti-depressants and ten years to get an X-ray that showed my back was crooked? From a purely economic point of view, it seems more efficient to test your patients, empower them with accessible health information and treat them effectively, does it not? why are we discouraged from empowering ourselves with accessible health information?

chronic illness patients are of big interest to Big Pharma. we are test subjects, profitable, often life-long clients, and subject to the shifts and projections made by fiscally informed corporations. the projections made by our specialists are informed by the projections made by biopharmaceutical researchers and accountants. this directly affects our access to information, treatment, services and care as chronically ill patients, and we as patients are not informed about these influences.

what if we shared health information with chronic illness patients while they are in the process of getting diagnosis and healing? what if there were chronic and preventative care centres where people could access information and care while they are in the process of navigating the complexities of the medical-industrial complex? why is the system working “for us” without prioritizing us?

why are patients excluded from being informed and having agency over our own care, our own bodies, and our own healing?