The many functions of diagnosis (more than treatment!)

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!

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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Doctors are still using “objective” diagnoses to dismiss patients

An orange background with black text and a cartoon of a doctor holding a file. “Doctors are still using ‘objective’ diagnoses to dismiss patients.” And below it, “Have you been inappropriately diagnosed with something as a way of dismissing your concerns? Did this have long-term negative affects on your ability to receive care?”⁣

I conducted an informal survey in a group for my illness, and women are still being “diagnosed” in droves with hysteria-by-any-other-name, “conversion disorder” and inappropriate diagnoses of anxiety.⁣
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These diagnoses not only waste the appointment, but may prevent patients from receiving care in the future as subsequent practitioners see this in their record and decline to take the patient seriously. ⁣
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Many people can relate to having their illness pegged as anxiety or depression: diagnostic overshadowing. This can be a major barrier to receiving care, especially among women and people with a mental health history.⁣
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Diagnosis: Conclusion

A teal background with white and black text, “Diagnosis conclusion. Medicine is not “objective”, it is subject to the same structures of oppression (racism, sexism, poverty, etc) as the society it exists in. Nor is medical knowledge complete, or the only valid way of understanding health and illness! How could our lives be different if our illnesses were taken seriously the moment they started to affect our lives, NOT only after we were diagnosed? ⁣

How could our lives be different if our illness was taken seriously the moment it started to affect our lives, not the moment we were diagnosed? ⁣
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Far from reflecting an “objective truth”, diagnosis, (like all other parts of the MIC) reproduces the same structures of oppression of the society it exists in: racism, sexism, transphobia, poverty, ableism, etc.⁣
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Medicine is not omnipotent. There will always be more to learn, more complexity, more unknowns.⁣
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I think it’s clear from this series that I have mixed feelings about how diagnosis functions in the medical-industrial complex and in our societies. ⁣
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Diagnosis should not be used as a short-hand for whether or not someone is “actually” sick, simply because medicine doesn’t have all the answers AND it exists within a racist, sexist, homophobic, transphobic, ableist, sanist, etc. society. ⁣
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Centering our experiences and validity of illness around diagnosis is alienating to those who can’t access medical power for any reason: poverty, race, sex, gender, politics, and what medicine still has yet to learn. ⁣
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Choosing not to seek diagnosis

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.   

Inter-diagnosis, undiagnosed, and self-diagnosed solidarity

A teal background with black and white text, “Inter-diagnosis, undiagnosed, and self-diagnosed SOLIDARITY. In a world that often dehumanizes “Others” solidarity is powerfully humanizing. Community strength, community change. ⁣

So many of our communities are separated by diagnosis or probable diagnosis, and that makes sense because you know those people share some of your experiences. But I remember the early years of being sick, when I was kind of in denial about it but still looking for community. There wasn’t anywhere to go, because I had not yet accepted that I was diagnosed, and I didn’t know how to find communities that weren’t based on diagnosis. As important as it is to work with others who share our diagnosis or probable diagnosis, it’s also important to work with other disabled and marginalized communities. ⁣
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There is strength in diversity, in diversity of thought and in diversity of experience. When we pull together, we can make big change- not only in our societies, but also in each other. In a world that often dehumanizes “Others”, solidarity is powerfully humanizing.⁣
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Should we celebrate a long awaited diagnosis?

A teal background with black and white text, “Celebrating diagnosis? Celebrating diagnosis is not celebrating illness. It’s about getting answers and care BUT– Your illness is real without a diagnosis. You should receive support without a diagnosis.

For those who are only familiar with acute illness, the concept of celebrating a diagnosis is akin to celebrating being sick. But for people who have been sick for months/years/decades without a diagnosis, getting clear answers is certainly something to celebrate. It gives us and our care providers a structure of what to expect: a name, an idea of how the illness progresses, and treatment/management options.

At the same time, I think it’s important to push back against the other ways diagnosis currently functions. Your illness is real without a diagnosis. You should be able to receive accommodations and support without a diagnosis. You are not worth less for being sick.

The personal consequences of waiting for a diagnosis for YEARS

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.

When diagnosis changes relationships

A seafoam green background with text, Diagnosis and Relationships. Now that we know access to diagnosis is affected by structural oppression and power, what does it mean when a diagnosis changes your relationships- for the better? ⠀

After I was diagnosed, I didn’t tell very many people. I had been sick for over a decade, with the diagnosis clear to me and everyone around me for at least half that time. I was just as sick as I was before a doctor officially named it. ⠀
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A relationship built on mutual respect is one where (in part) all parties respect the others lives and experiences. If that relationship changes positively solely because someone with more power (a doctor) confirms what a sick person has been saying for quite some time, it’s not a relationship built on mutual respect. Relationship repair may be necessary before moving forward.⠀
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Contested illness

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. ⠀