graphic by gillian kwok
Self-diagnosis. A quick Google search will immediately tell you that it’s not valid and dangerous. Here’s the thing though — these are broad statements that simply aren’t always true. Self-diagnosis can absolutely be valid and it can often be more dangerous to go through life not understanding your own mind and body instead.
I’m not talking about the people who notice that they have a single symptom of a mental or physical illness and go around telling people they have said illness the next day. I’m talking about the people who do an immense amount of research on their symptoms, speak to others who are diagnosed and pass diagnostic criteria. That is valid. That might even be necessary.
Diagnosis is a privilege. Everyone that is against self-diagnosis says the same thing: “You’re not a medical professional. You need a real doctor for a diagnosis.” But going to a doctor and getting a diagnosis is not always easy, quick or even possible. There are a quite few hurdles that might get in the way
- Medical Bias
Your experience with seeing a doctor often depends on things like your age, weight, race and gender.
If you’re young, doctors often argue that you’re simply too young to have anything wrong, and if you’re a senior citizen, they argue that what you are experiencing is just part of getting older. At both ends of the spectrum, patients are often told their problem is “all in their head” and a diagnosis can be delayed or even avoided entirely.
If you’re fat, doctors often argue that you simply need to lose weight. It doesn’t matter that you came in for a problem that has absolutely nothing to do with weight — doctors will say that exercise and a healthy diet will fix anything! When medical issues are falsely attributed to weight, a proper diagnosis is severely delayed, even sometimes past the point of ever getting treatment. A 2019 article from the Journal of the American Medical Association pointed out that a woman with advanced cancer was repeatedly dismissed by doctors as they wrongly attributed her symptoms to her weight. She was only given a proper diagnosis when it was too late, and she died just days later.
If you’re not white, the lack of minority data in clinical studies and medical textbooks lead to racism and prejudice among doctors. Minority patients feel as though they are taken less seriously or that their needs are ignored entirely in the healthcare system. A study focusing on pain management from the National Center for Biotechnology Information found that only 35% of racial minority patients with metastatic or recurring cancer received appropriate and adequate pain-management prescriptions because many doctors believed that non-white patients had higher pain tolerances than that of white patients. When the entire medical community has these kinds of misguided preconceived notions based on race or a lack of knowledge of the specifics of how minorities are affected by certain medical conditions, chances of a proper diagnosis are absolutely going to be hindered.
Lastly, if you’re not a man, doctors seemingly attribute your symptoms to anything but the actual cause. A survey from the National Pain Report found that 91% of women feel the healthcare system discriminates against women. Many feel like their symptoms are often brushed off as psychosomatic or “neurotic.” Apparently we learned nothing from the 18th and 19th century trend of diagnosing women with “hysteria,” a catch-all term for any undesirable traits for a woman. It’s either all in women’s heads, or it’s hormones. Further, women of “childbearing age” are often blocked from participating in medical studies, meaning there is less medical research to rely on and misdiagnosis rates rise.
- Being Dismissed
There are a few common dismissive phrases people hear when they visit a doctor for a medical concern.
First, “it’s probably just anxiety.” If that sentence made you physically cringe, you’re not alone. Doctors seem to think patients are overreacting because of anxiety and immediately dismiss them instead of doing any kind of test or diagnostic routine to put the patient at ease.
Second, if you tell a doctor that you think you have anything even remotely undesirable, you are immediately told, “oh no, trust me, you don’t want that.” Of course you never said that you wanted it, but it doesn’t mean you’re not experiencing symptoms that match the diagnosis.
And third, if you actually managed to get a doctor to run basic tests by successfully advocating for yourself (a skill that is quite difficult to master) and they come back normal, there probably won’t be any follow up tests. You’ll be told, “your tests are all normal so you must be fine,” despite your symptoms persisting.
- Monetary and Emotional Costs of Diagnosis
To visit the doctor, you either need insurance or you need to be able to pay out of pocket. The more complex your problem is, the better insurance or more money you need.
randomlymedicine, a doctor on TikTok, said it best: “Some diagnoses are kind of expensive and fancy.” As your diagnosis gets more complex, it gets more “fancy” and more expensive. For example, an anxiety or depression diagnosis is not “fancy” as it is fairly common and can usually be diagnosed by a primary care physician based solely on a conversation. However, an autism spectrum disorder or ADHD diagnosis is considered “fancier” as it is considered less common, requires going to a diagnostic center and requires very specific tests.
Not only are “fancy” diagnoses expensive, but they also require much more work to get and are therefore more emotionally exhausting. Basically, the more complex your disorder is, the harder it is to get diagnosed, and the more likely people are to resort to self-diagnosis.
Countless articles have been written in the last year or so bashing on the idea of self-diagnosis, claiming that people, and particularly Gen Z, are using what they see on TikTok to self-diagnose autism, ADHD, and some physical chronic illnesses in an effort to be “special.” Headlines like “Addicted to being sad: Teenage girls with invisible illnesses – known as ‘Spoonies’ – post TikToks of themselves crying or in hospital to generate thousands of likes” from the Daily Mail or “Dangerous new TikTok trend encourages teens to diagnose themselves with rare personality disorders” from WRTV circulate the internet.
These articles claim that teenagers on TikTok self-diagnose as part of a trend, to get out of responsibilities, or simply to get more views and attention. None of the articles mention how difficult it is to get these diagnoses or how most of these people aren’t doing this to “feel special” but are actually just trying to attach a name to the very real symptoms they are experiencing. In most cases, it’s not for attention; it’s out of necessity.
To get a proper diagnosis for a mental or physical issue like autism, ADHD, processing disorders, fibromyalgia, ehlers danlos and more, people are required to not only advocate for themselves and get their doctors to take their concerns seriously (which is quite a difficult skill to master), but they also likely need to continue on to see specialists like neurologists, rheumatologists and geneticists. Patients need to demand adequate care every step of the way and can only hope that these doctors display zero medical bias and that they can both emotionally and financially handle the process. As long as these obstacles exist, self-diagnosis will remain a necessity.
Often, it is easier to self-diagnose, and many people feel more at ease mentally when they have a word or an understandable cause for their symptoms. Self-diagnosis can make people feel more valid and more understood both with their peers and within themselves.
Diagnosis is absolutely a privilege. So maybe stop before you call out every person you see who self diagnoses and recognize that it is not always easy to get anything official. Think about your own privilege before you comment on someone else’s situation; self-diagnosis might be all someone has to make them feel in control of their own body and mind.