Tag: medical model

The many functions of diagnosis (more than treatment!)

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A yellow background with a big blue magnifying glass showing a heartbeat pattern. The title text reads, “The many functions of diagnosis” and at the bottom in bold, “What would you add?” In the center it asks, “Have you been told there’s no point seeking a diagnosis because there’s no treatment available?” and then lists the above functions, “Community, understanding, validation, statistics (being counted!) and pathologizing.” The Willow’s Work logo sits at the bottom of the image.⁣

I’ve heard countless stories of folks who are told there’s no point seeking a diagnosis because there’s no treatment available. But there are so many more reasons diagnosis exists. ⁣
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What other functions of diagnosis would you add? ⁣
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Community – Often, disability communities are organised by diagnosis. This can be a huge barrier to finding folks who relate to your experiences when you’re undiagnosed! (But the good communities accept people who are exploring or self-diagnosed!) ⁣
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Understanding – Diagnosis gives us a framework to understand what is happening and what may happen with our bodyminds in the future. ⁣
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Validation – While the medical model and neoliberalism still rule, diagnosis is key to recognizing that your experiences of illness are real- for yourself and others. ⁣
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Statistics – Receiving a diagnosis means we’re counted among folks with that illness, which is used to allocate research funding and means we’ll be able to access treatments if they become available in the future. ⁣
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Pathologizing – The dark flipside of validation, receiving a diagnosis means reading your experiences as “wrong” or “disordered” and understanding them within the medical model- though of course there are so many other ways to understand our experiences than just the medical model. See: neurodivergence and Madness! ⁣

Diagnosis: Relief!

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A blue and teal drawing of a medical chart with a pop-out heart, and title text “Diagnosis: relief.” The subtitle reads, “A new, expected diagnosis can be scary.” And in bold, “But receiving a solid, accurate diagnosis for issues you’ve already been living with can be a huge relief!” Smaller text reads, “Diagnosis is complicated, but you don’t have to feel ashamed if a new one comes relief.” ⁣
A blue and teal drawing of a medical chart with a pop-out heart, and title text “Diagnosis: relief.” The subtitle reads, “A new, expected diagnosis can be scary.” And in bold, “But receiving a solid, accurate diagnosis for issues you’ve already been living with can be a huge relief!” Smaller text reads, “Diagnosis is complicated, but you don’t have to feel ashamed if a new one comes relief.” ⁣

A NEW DIAGNOSIS SUCKS WHEN YOU THOUGHT YOU WERE HEALTHY- BUT IF YOU’VE BEEN LIVING WITH ILLNESS ALREADY, IT CAN BE A RELIEF. ⁣
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My partner made this astute observation lately: a new diagnosis is a bad thing when you thought you were healthy. ⁣
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But when you’ve already been living with illness or disability, the correct diagnosis can be a relief! ⁣
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Because it can mean better access to care, understanding your needs better, and better treatment from healthcare providers (depending on the diagnosis.)⁣
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(At the appointment during which I gained this learning, my GP showed a good understanding of diagnosis beyond medical meaning- and I was so shocked I couldn’t respond. But I’m very grateful for that.) ⁣
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Why do some doctors not “believe in” certain illnesses?

TheWillowsWork1 Comment
ID6: A fill-in version of the previous slides. A graphic of a doctor holding a clipboard with a speech bubble in bold, “Oh that? I don’t believe in” with a blank space below. Below it is a graphic of a dark skinned person in a pink dress and purple long sleeves using a cane, “Well doctor,” it starts, leaving room for the reader to fill in below.
ID3: A graphic of a doctor holding a clipboard with a speech bubble in bold, “Oh that? I don’t believe women can have ADHD.” Below it is a graphic of a dark skinned person in a pink dress and purple long sleeves using a cane, Well doctor, both racism and sexism conspire to ensure you were only educated in how ADHD looks in hyperactive white boys, leaving behind inattentive types and anyone who has to hide their ADHD to survive.” In smaller text at the top of the image is this note, “I wouldn't classify ADHD as an illness, but as neurodivergence. However, in order to receive supports it can be imperative that a doctor "diagnose" someone with ADHD first.”
ID5: A graphic of a doctor holding a clipboard with a speech bubble in bold, “Oh that? I don’t believe in ME/CFS.” Below it is a graphic of a dark skinned person in a pink dress and purple long sleeves using a cane, “Well doctor, the research disagrees with you. Deconditioning and lack of motivation are insufficient to explain multi-system disease and post-exertional malaise. Post infectious illness isn't even new. Catch up.”
ID1: A graphic of a doctor holding a clipboard with a speech bubble in bold, “Oh that? I don’t believe in that illness.” Below it is a graphic of a dark skinned person in a pink dress and purple long sleeves using a cane, “Well doctor, I didn’t fly Neil Armstrong to the moon, but I’m willing to look at the evidence and believe he went there.” The background of the image is solid yellow.
ID2: Why do some doctors doubt that certain illnesses exist? Misogyny and sexism. Often, what doctors doubt isn't the evidence but the experiences of patients in illnesses that primarily affect women, or they doubt how illnesses show up in femmes. Underfunding (Western) research. An illness without a large body of evidence is often considered psychosomatic by default, which means it is much harder to get funding to ever increase research. Personal lack of understanding. If the healthcare provider isn't up to date on the latest research or there isn't much biomedical research out there, they may equate their lack of understanding with the illness not existing at all. In smaller underlined text, ”Western biomedical research is not the only "valid" way of knowing, but it is telling when doctors dismiss their own knowledge system, even when it's gatekept and exclusionary in ways that preserve their power.”

They gatekeep and exclude folks from their knowledge bases, and then refuse to keep up with their own evidence. 

Almost always, I hear about health care providers saying they don’t believe in illnesses that primarily affect women. 

You don’t have to understand a thing for it to be real. I don’t understand how cars work, but I believe they’re real. 

Those same illnesses are underfunded and thus remain under-researched, which feeds into the idea that they’re not “real” according to Western medicine.

Rx for Healthcare with @UNWELLUNLIMITEDLY

TheWillowsWorkLeave a comment
1) A photo of Kaia framed by an illustration of a cell phone. Black text that reads: “At its core, medicine has a power problem. Western medicine over everything else, doctors at the top, and patients are nowhere on the map.” 2) Text reads: Kaia M. Arrow (she/her) recently completed her Bachelor of Social Work. In her writing about the biopolitics of health and chronic illness, she brings together structural understandings of power with an anti-colonial, anti-capitalist, and body neutral approach. Kaia is a Mad, sick & disabled, queer, Filipina settler.]

YES! A more collaborative system – we NEED this! Love this powerful quote from Kaia @thewillowswork, who I’m featuring as part of my new series #RXingCare. Kaia is, among many things, my friend, neighbour, fellow #spoonie, and as of today, a voting buddy too. 💕

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I also love this quote from her:

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“Everyone in medicine- including patients- has their own expertise. We’d provide better care to everyone if we could work together.”

Do you agree? I DO!

Kaia also shared some other EXCELLENT prescriptions for our healthcare systems:

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“My dream healthcare experience is collaborative and interdisciplinary- not just between specialists, but between approaches. I’d love to see practitioners asking more questions and asking for help. Ask me what I think, and give my answer weight. I’d love to see a rheumatologist consult with a practitioner of Traditional Chinese Medicine, or a social worker consult with community elders in how best to support a family.

I’m imagining medicine gardens planted alongside hospitals built with access to nature in addition to sterility in mind- and nobody rolls their eyes when Indigenous healers bring their expertise to the bedside. “Helping professionals” asking permission to practice this kind of work on stolen land. I’m imagining naturopathy and acupuncture accessible to all, and healthcare available literally for all. I’m imagining asking for help and saying you’re sorry and being okay with learning and unlearning. I’m imagining community healing.”

“Doctor Shopping” stigmatizes self-advocacy

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A beige background with green text, “Find the doctor that can serve your needs. “Doctor Shopping” stigmatizes self-advocacy. Doctors aren’t interchangeable- rapport and experience matter!” The bottom right corner has a graphic drawing of overlapping green monstera leaves. There is an olive caduceus underneath the text.
A beige background with green text, “Find the doctor that can serve your needs. “Doctor Shopping” stigmatizes self-advocacy. Doctors aren’t interchangeable- rapport and experience matter!” The bottom right corner has a graphic drawing of overlapping green monstera leaves. There is an olive caduceus underneath the text.

One of the great frustrations I have is the concept of “doctor shopping.” Doctor shopping is a negative term used to describe people who visit multiple doctors, trying to find someone who works well with them. You SHOULD shop around for a doctor who understands your needs, is willing to learn, can communicate well with you, and understands you are the expert in your own body. 

We understand that when you’re searching for a therapist, the most important factor is whether or not your “click”. We should hold finding a physician to the same standard.

Choosing not to seek diagnosis

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A teal background with black and white text, “Choosing not to seek Diagnosis. Many people choose not to seek diagnosis because the medical system can sometimes cause more harm than good: Dehumanizing those deemed sick or broken, and pathologizing people for being different.” In bold, “Part of addressing the power imbalances in medicine is allowing for different understandings and experiences of health, illness, diagnosis, and care.”
A teal background with black and white text, “Choosing not to seek Diagnosis. Many people choose not to seek diagnosis because the medical system can sometimes cause more harm than good: Dehumanizing those deemed sick or broken, and pathologizing people for being different.” In bold, “Part of addressing the power imbalances in medicine is allowing for different understandings and experiences of health, illness, diagnosis, and care.” 

While this is more common in neurodivergent communities, many people choose not to seek diagnosis because the medical system can sometimes cause more harm than good. 

It is a method of consciously abstaining from the medical-industrial complex that can be so dehumanizing. 

It is also done to push back against narratives of “brokenness”; of pathologization where someone doesn’t feel broken: it’s capitalist, colonial, neoliberal, ableist, w h i t e supremacist society that’s broken (truth!!!). 

Part of returning power to the peoples hands is allowing for different understandings of health, illness, and diagnosis. Whether self-diagnosed, undiagnosed, or rejecting pathologization or medicalization, our experiences are real and should be treated that way.   

The personal consequences of waiting for a diagnosis for YEARS

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A teal background with black and white text, “The personal consequences of waiting for diagnosis for 10 years. Did you know you COULD be sick without a diagnosis? Did you know how to move through the world without a diagnosis? How can we change our cultural understandings of illness to make room for medical uncertainty, and decolonize from the Western medical model?
A teal background with black and white text, “The personal consequences of waiting for diagnosis for 10 years. Did you know you COULD be sick without a diagnosis? Did you know how to move through the world without a diagnosis? How can we change our cultural understandings of illness to make room for medical uncertainty, and decolonize from the Western medical model?

It was 10 years before I was diagnosed, and 5 before I truly accepted that I was sick and it wasn’t going away. I didn’t know that I COULD BE SICK without medicine backing me up, and I certainly didn’t know HOW to be in the world as a sick person without a diagnosis.

I had to be able to accept that I was sick WITHOUT a diagnosis to manage my health well, and that meant building up my self-worth and self-confidence to name my experiences as illness despite pressure not to without a doctor.

In those five years, I subjected myself to harmful interventions to prove that I was dedicated to getting better. Fad diets, daily intense physio, strict sleep schedule even when it meant I wasn’t sleeping for days.

I knew my limitations were real, but without a diagnosis I didn’t feel like I could advocate for my own accommodations. I left a position where I was being pressured to drop my accommodations believing that I was unreliable, not that what my supervisor did was illegal.

I was incredibly hard on myself for not “just being normal” even though I knew my body wasn’t functioning as “normal”. I punished myself for not cooking by refusing to buy prepped food, and so I just didn’t eat a lot of the time.

We must develop a cultural understanding of illness outside of medical care, because often that care is not accessible or simply doesn’t exist.

Undiagnosed …and left behind?

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A sage green background with the text, “Undiagnosed and left behind?”
A sage green background with the text, “Undiagnosed and left behind?”

Remaining undiagnosed for years (even decades) is not uncommon. Chronic illness communities are often structured around diagnosis- but with a twist: (the good ones) tend to be accepting of undiagnosed and self-diagnosed folks, understanding that diagnosis is a process of power that not everyone can access. What would the world be like if diagnosis wasn’t the key to receiving care and support? What changes do you think would take place? How could your life have been different, if your illness were valid as soon as it started to affect your life, instead of when it was diagnosed?

I lived without a conclusive diagnosis for 9 years. I wasn’t able to access appropriate treatments, management techniques, home support, and accessibility measures. Had I been diagnosed, I would likely have twice as much functioning as I do now. Still, the worst part was the lack of social support. Without the backing of the medical-industrial complex, whether or not I was sick at all was constantly in doubt. 

I lost relationships to people who couldn’t adjust to my limitations, and preferred that I not be sick around them. There was a period (before I started this blog!) where it was difficult to find anyone to talk to about being sick. There is very little language for describing an undiagnosed illness, which contributes to the isolation. At the same time, I had my own doubts (including a dangerous period where I thought I could discipline the illness out of me) including uncertainty about what my life would look like. 

Diagnosis is just one part of the medical-industrial complex that centralizes too much power in a system that is designed to maintain power imbalances. 

Contested illness

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A sage green background with the text, “Contested illness: An illness that healthcare providers may or may not believe is "real" (has a known physical origin). Stigmatized and underfunded, with roots in sanism.
A sage green background with the text, “Contested illness: An illness that healthcare providers may or may not believe is “real” (has a known physical origin). Stigmatized and underfunded, with roots in sanism.

I will admit, I couldn’t help but fantasize about getting a diagnosis other than ME/CFS. I wanted something other people would understand, something that wasn’t on the cutting edge of research. “Contested illness” is used to describe an illness that health care providers may not believe is real or valid, because there is no obvious physical abnormality. It’s most often used to describe illnesses experienced primarily by women. Of course, if medical professionals don’t believe an illness is real, they’re not going to fund research to find physiological abnormalities, and the cycle of disbelief continues. ⠀⠀

Have you received a diagnosis of a contested illness? Do you feel it was correct? How do new care providers react when you share your diagnosis? ⠀⠀

Contested illness is what happens when the medical industrial complex loses sight of itself. Ask any medical professional, and they’ll tell you that medical science does not know everything. But given a patient with unexplained symptoms and a swiftly disintegrating life, they’ll shunt them over to psychiatry rather than admit they don’t have the answers- which is itself, sanist. ⠀⠀

Receiving a diagnosis of a contested illness can be difficult- I know I had a lot of mixed feelings. There was relief at finally being able to name what I was experiencing, but also frustration and grief that my diagnosis would continue to put me at risk of stigmatized care. ⠀

Self-diagnosis is valid & valuable

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A teal background with the text: Self diagnosis is valid. Self diagnosis is an important tool for working with and outside of medical systems, especially when access to diagnosis is inequitable.
A teal background with the text: Self diagnosis is valid. Self diagnosis is an important tool for working with and outside of medical systems, especially when access to diagnosis is inequitable.

In the last installment of the diagnosis series, we talked about how diagnosis can be difficult to access. Self-diagnosis often comes from not being able to get a diagnosis, for whatever reason. In mainstream communities, self-diagnosis is reviled. There are so many horrible memes about how people who self-diagnose are not actually ill. We know that comes from the medical-industrial complex, which has a monopoly on the power to name illness as valid. But when the medical system can’t help you, it makes sense to start looking for answers yourself. ⠀
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I’m proud that the chronic illness and mental health communities I’m a part of are welcoming of self-diagnosis and being undiagnosed, because we recognize that there are serious barriers to getting a diagnosis. Self-diagnosis opens us up to resources, tools, and communities that can help us live with our illnesses and disabilities better. It can also help us advocate better within the medical-industrial complex, though sometimes that can backfire. Self-diagnosis is an important way to work with and without medical systems. ⠀