As a medically complex patient, my first appointment with new healthcare providers generally follows a usual pattern: They step into the room, we smile and exchange pleasantries in a familiar, easy script, and they prompt me for some of my medical history. I tell them it's a bit long, complex, and may take more than one appointment to get through. They usually flash a glazed-over smile, not really processing what I said, or maybe they chuckle like a parent would about a child telling a greatly-exaggerated tale of adventure, or, maybe they give a comment of reassurance. Around twenty minutes into the appointment, their eyes grow large, and something along the lines of “wow, you weren't exaggerating.” is uttered.
It is true, my full diagnosis list is a relatively lengthy 30+ conditions that have been diagnosed by healthcare providers. It looks daunting, even more so if you want to get nit-picky and split every symptom that could be its own condition from its correlated diagnosis. Even when I try to pare it down as best I can, it is still a beast to take in if you aren't used to seeing it. The funny thing is that the vast majority of them can actually just be boiled down to one or two “core conditions” that branch into an array of different facets. So if this is true, why bother going through the entire list? Why identify with so many terms?
Here are some things to consider when thinking about why a person may or may not prefer to use certain labels for their identities and experiences:
For me, as an autistic individual who craves the security of having lots of information, every diagnosis has a path that I can see laid out before it. I can see what treatment methods I have tried, and those that I haven't. I can see what medications or therapies other patients and providers have used, and how successful those were. If an issue I am having can have multiple different causes, if I seem to run out of treatment options, I can go back and retrace my steps, and attempt things from another angle. I can take the time to investigate if a new symptom could be caused by one of several conditions, or if it could be a side effect from a new medication. I can find others who understand how I feel or can tell me what to do. I can take each diagnosis and turn it over, feel its edges, rework it again and again until I feel solid that I am doing everything I possibly can to feel as best as I possibly can. I can get as close as possible to feeling absolutely sure.
I would like to use autism and schizophrenia as an example. I have been diagnosed, re-diagnosed, and re-diagnosed again. I have been told in the same breath that autism and schizophrenia have a large overlap, but that also, somehow, being diagnosed with both is rare (even though research has shown that autistic folks may be 3x as likely to also be schizophrenic). And, each time a provider has shown doubt, a history or description of how they each affect me, and if very-doubtful, a 200-question-long screening generally affirms I have what could be considered both.
Schizophrenia and autism have presentations that may look (and feel) largely the same. For example, what could be called an autistic shutdown could also be called catatonia in schizophrenia. Medicalized differences in emotional expression such as “flat affect” and “inappropriate emotional response” are also clinically reported in both, as well as sensory processing issues and hallucinations.
But for me, the visual distortions that come with sensory processing disorder are not the same experience as the acute, persistent, and often distressing hallucinations that occur alongside my schizophrenia. They do not feel the same emotionally, nor do they often look (or sound, or feel) the same either.
Someone else with these experiences may feel they are one in the same. Ultimately, diagnoses were largely created as codes to benefit insurance companies, far more than they were created to benefit healthcare providers or their patients. And, while some may find labels necessary to accessing treatment and at the very least, comforting, another may find them restrictive and stigmatizing.
For some, the label of a diagnosis, or any label for that matter, may feel constricting rather than eye opening. I identify as queer and transmasc. There are more micro labels being discovered every day for sexuality and gender, and if I tried hard I could probably find something, or a combination of things, that more fully describe my experience in orientation and gender, but right now I feel more comfortable settling into a broader label. My sexuality and gender are fluid, responsive to the world and society around me, shifting throughout my life due to experiences (both good and bad), medical issues, and many more factors I'm sure I haven't discovered yet. So, using “queer” feels like a label that has room for that expansion and change throughout my life. And who knows, perhaps a month or year or several years from now, I'll feel differently and want to use more precise labels, and that will be okay too.
I do not understand why my brain copes with labels around gender and sexuality, and disability and illness, so differently. I only know that it does.
Another reason that someone may desire specific labels is that they serve as an explanation for more complex experiences that feel muddled or confusing, not just for themselves, but for those around them as well.
I have anorexia, but I also have a GI condition called paralytic ileus, and chronic intestinal pseudo obstruction. Parts of my small intestine are paralyzed, making it downright dangerous to eat, or even drink, during periods of flares.
It is important for me to be able to differentiate between the two for both myself, and those around me. Am I avoiding food due to my restrictive eating disorder? Or am I unable to eat due to a high risk health condition? Learning to listen to my body with this health condition becomes all the more imperative, and difficult and confusing, since the consequence of eating and drinking during a flare up is the risk of organ rupture. If someone were to pressure me to eat during a flare because they think that eating would be “fighting the eating disorder”, it could land me in the hospital for emergency surgery, or worse.
I need to be able to tell the difference, and explain that difference, between not wanting to eat but still being able to push through with harm reduction, or being unable to eat, and listening to my body’s lack of hunger as a different but often more crucial form of harm reduction. Hypervigilance around my body is no longer irrational, but crucial to my survival, and being able to explain that to those around me is important to ensuring my safety.
This is more specific to chronic illness and disability, but can still be used for other identifiers when considering access to resources. For patients, especially those with complex symptoms, navigating the medical system with an incorrect or missing diagnosis presents a challenge. We live in a world where, unfortunately, medical care has limitations on how many people it can help when, for example, we regard how many patients a provider can accommodate in a specific time frame. Many healthcare providers, especially more specialized ones, have waitlists that can be months or even years long. This forces them to prioritize which patients get access to their resources, a process already affected by systemic ableism and other factors that play into that dynamic. A patient with higher support needs, but a diagnosis that does not accurately reflect that need, can therefore often be left behind. This is not only emotionally painful for patients to deal with, especially when on a regular basis, but can, and often does, impact a patient's physical safety. This can make an accurate and validating diagnosis essential to a patient’s wellbeing.
An inaccurate diagnosis can cause more direct harm as well, such as when a misdiagnosis leads providers and patients to trial treatment methods that, due to being intended for a different diagnosis, actually worsen a patient's condition, sometimes in permanent and/or life threatening ways.
From my experience personally, it has been helpful for me as a patient (and some of my providers as well) to recognize that healthcare professionals are human too. I have found that in the past, I looked to doctors as this all-knowing, unbiased system. Having certain doctors act like they believed this as well reinforced that feeling. Over time I have learned that the doctors who helped me the most, both on an emotional and physical level, have been doctors who also seem to view themselves as “merely” human. This creates an open-mindedness that allows both professionals and patients to learn and grow together. The doctors who have caused me the most harm, some of that which is irreversible, have generally been the ones who seem to believe that they are all-knowing, and reflect a level of confidence that speaks more to stubbornness and perhaps underlying insecurities, than to actual medical knowledge. The pressure put on doctors by patients who desire to have that knowledgeable figurehead only deepens that pressure on doctors to know everything. In my experience, both healthcare providers and patients easing up on that pressure, being honest about their capabilities and what they know and maybe more importantly, what they don't know, and deciding to work collaboratively with open minds and an eagerness to learn, greatly improves provider-patient relationships, and therefore the health and safety of patients with complex illnesses and disabilities.
I have had a number of healthcare providers voice the desire to stop using strict diagnoses as the central goal of treatment, and rather just work to treat the symptoms. Overall I believe this would be a positive change. After all, diagnosis, in a large way, are social constructs (as well as “health” in general). We decided that a set of symptoms or test results has this specific name for it. But, bodies (and human experience) are highly individual, we just don't work in a way that would allow for the neat and tidy categorization of every person and every illness, being able to shelve certain things under certain labels without complexity and control. This is an important concept to realize, however, it is just as important to realize that the world we live in, the current society we exist in, does largely require at least an attempt at categorizing in order to acquire access to various resources.
One of the most frustrating parts of having chronic illness is the waiting. Because of the limited available resources, there is a lot of waiting involved. Waiting for the next appointment. Waiting for your test results. Waiting for the medication to start working. Waiting to get into treatment. It's honestly excruciating, especially when your illness is progressive, and an incorrect or missing diagnosis often makes these waiting periods even longer, which not only prolongs discomfort, but can put a patient's life in jeopardy. There isn't an easy solution for this, but an accurate diagnosis can feel important to a patient due to how it may impact this difficult part of healthcare and treatment.
Wrap up:
Labels are tricky business. Our desire, and at times need, for labels (or lack thereof), is highly individual. I think for me, the most important thing to remember and process, are both the benefits and limitations of labels around identity and diagnosis. There is no perfect system here, so understanding how exactly they may help a person, and where they may fail them, and figuring out a way to balance it all out so that the least amount of harm is done, is a great conversation to have between patient and provider when regarding medical diagnosis. Thinking about these concepts can be expanded to other identifiers folks may want to use or opt out of, such as gender or sexuality. I think the biggest takeaway for me has been realizing that we all live complex lives, and compartmentalizing is an imperfect strategy that helps me think about my own journey and lived experiences, rather than a strict set of rules to abide by. Of course, your own experience may be highly different, and it's up to you to decide what works best for you.