What is a diagnosis?

If you spend much time in online communities based around a neurodivergent identity you will see an almost constant discussion about diagnosis. At least I've noticed this in ADHD forums such as r/ADHD on Reddit. This is understandable, as receiving a diagnosis an be an imporant event in a person's life. The discussion typically revolves around the mechanics of the diagnosis process; how to find an appropriate medical practitioner, how long does it take, and what testing is done. Rarely discussed however is the /purpose/ of a diagnosis. What do they do /for/ neurodivergent people, and how are they used against us?

In medical first responder training it was made clear to me that that only doctors make diagnoses. If your patient looks like they have two elbows, you can say something like "the right forearm appears angulated." You definitely cannot say "the right ulna and readius are fractured." So I originally considered neurodivergence diagnoses the same way. Only someone with a medical license could determine if the way that I experience the world is different from neurotypical people. This is a recipe for impostor syndrome, which at least for me persisted well after I received a diagnosis. This is sometimes refinforced in communities, where you are not fully accepted unless you have an official diagnosis.

From a personal perspective, gaining access to peers whose experiences match your own may be key to improving your own mental health. But a diagnosis shouldn't be required. Communities of neurodivergent people should foster a culture of openess and welcoming to people who feel an affinity with the group. People lack a diagnosis for all kinds of reasons, not least of which is the general inaccessibility of mental healthcare in the United States and elsewhere. Stories of months- to years-long waits for a diagnosis are common. Others never seek a diagnosis because it is too costly. Medical professionals are fallible; some are woefully unprepared to evaluate patients for mental health diagnoses, particularly for ADHD which is often perceived as overdiagnosed and is dismissed as a possibility for patients who have worked hard masking their entire lives.

From a medical perspective, a diagnosis is not a ticket to join a social group. For both better and worse, a diagnosis is a label. This can be helpful for a patient because it allows for clear communication among medical practitioners. You may receive a diagnosis from a mental health expert, but once you have the diagnosis your general practitioner will hopefully recognize it. It is also the kind of label that health insurance companies recognize; without the label they will not pay for treatments regardless of how helpful they might be.

I view a diagnosis a bit differently from either of these. It is a tool, just like a hammer or a stethoscope. It provides a lens that you and/or your doctor can view your life and health decisions through. It opens up the possibility of medications that wouldn't otherwise be available. If you're considering getting a diagnosis, consider what you can do with a diagnosis that you couldn't do without one.

But you also have to pay for your tools. A diagnosis, particularly a mental health diagnosis, can have costs. Social stigma is real. But there are also tangible costs that were not an issue before I got an ADHD diagnosis. I pay extra for life insurance. If I want to become a pilot I'll have to disclose my diagnosis to the FAA and spend thousands of extra dollars to get a medical authorization before I can fly.

This is not exclusive to mental health diagnoses. To test for Celiac disease, you need to literally make yourself sick by eating gluten, so that a gastroenterologist can see damage in your small intestine during an endoscopy. But insurance companies won't cover an endoscopy without positive blood tests---blood tests that are known to throw false negatives for a not-insignificant portion of people with Celiac. In this case a diagnosis doesn't really change the treatment, which is just to not eat gluten. So self-diagnosing and self-treating is entirely reasonable in this case. But you might also miss out on other benefits, such as financial support for medically-necessary food. And without a diagnosis you might not be eligible for treatments that are developed in the future.

We are seeing a similar situation play out with long Covid. As the medical establishment starts to take long Covid seriously, they're only allowing the diagnosis for someone who had a positve Covid test (and sometimes only a PCR test). So if you got Covid before testing was available, or consistently tested negative because newer variants are more difficult to test for or because you're fully vaccinated, or because you just got tested at the wrong time, you won't be eligible for treatment of long Covid. Even though you are currently living through a Covid pandemic and your symptoms might be consistent with long Covid.

So where does that leave us? We can't ignore the expertise of medical professionals. But we should also recognize that they're fallible humans, just like us. In an ideal world patients and doctors would be working together to find the best treatments for that patient's particular problems. The working relationship should be one of mutual respect, rather than a doctor issuing health edicts from on high. Doctors should listen to patients and believe what they have to say. And if someone chooses to self-diagnose we should generally default to believing them.

Caveat

I need to note that my experience with the health care system has been largely positive, and I have generally had these kinds of good working relationships with my healthcare providers. This is almost certainly because I am a white, straight, cisgender, educated man.

Further reading

If you'd like to read an academic treatise on patients' conception and experience with ADHD and its diagnosis, check out "Experiences and Explanations of ADHD" by Mikka Nielsen.

© draoi 2022, CC BY-NC-SA