Self-diagnosis

Self-diagnosis, as the name would suggest, is when one attempts to diagnose oneself or family and friends when experiencing certain symptoms, typically with the help of symptom checkers found in books and, increasingly, the internet.

One or two online tests don't make it official.
Against allopathy
Alternative medicine
Clinically unproven
v - t - e
“”A physician who treats himself has a fool for a patient.
—Dr. William Osler (1849-1919)[1]

Symptom checkers may be useful for finding what one should do (e.g. whether to go to a pharmacy, book an appointment with their doctor, call an ambulance, etc.), but in and of themselves they are useless and potentially dangerous as they may result in the individual using ineffective treatments whilst snubbing help which is effective. Alternatively, the nocebo effect may make the person's condition feel even worse, resulting in them worrying more than is necessary.

The problem with this is that even when the symptom checker one is using is from a trustworthy source, the vast majority of people have no medical training and thus may have difficulty noticing things that a professional doctor or nurse may notice (it doesn't help that some different diseases may have similar symptoms) and also may not have access to equipment which may help them determine the cause of the symptoms.

Patterns in self-diagnosis

Psychiatric self-diagnosis is popular. People are more likely to diagnose themselves with mental conditions such as:

More far-fetched examples include self-diagnosing with dissociative identity disorder, or self-diagnoses that otherwise include existential woo such as "otherkin" and "therian" identities (which are not supported by scientific evidence), and other purported phenomena such as indigo children. While some otherkin people openly admit they're just doing it for fun or to cope while they're going through a hard time, other times these people are serious.

Some people self diagnose simply because they lack opportunities, or because other people refuse to help them.

  • The expense of seeing a doctor in the US is so high that many undiagnosed people or people suffering from mysterious symptoms had to make do with the internet.
  • Women[2][3] have tales about struggling to get doctors to take their symptoms seriously.
  • African Americans have huge issue with untreated and undiagnosed mental illnesses due to mental health issues being stigmatized in their communities.[4]
  • Minors with unhelpful or downright awful parents may not be able to see a doctor in order to seek proper diagnosis and treatment. Self-diagnosis on the internet can simply be a symptom of people desperate for answers.

In these situations, a change of circumstances (like a more understanding doctor or better health insurance) may lead to the person getting an accurate medical diagnosis.

And then other people have less logical reasons for self-diagnosing.

  • They need a scapegoat for issues with their own life.
  • They have illness anxiety disorder (formerly known as hypochondria), and worry excessively about their health.
  • They don't feel special, and think self-diagnosing will fix that.
  • They're attention seeking, and either haven't realized that they can just ask people to hang out with them, or have parents that are so legitimately awful that the child fakes a disorder in the hopes of finally getting some attention.

Attitudes towards self-diagnosed people

Mistreatment

People who self diagnose may be mocked, especially online. Unfortunately, this can mean that teens who don't know any better, or people who actually do have a mental illness or disability, may be targeted unfairly.

Harassment over whether someone is faking an illness or disability is an issue on social media. Professionally diagnosed autistic people can be harassed over the validity of their diagnosis if they defend self-diagnosis.

Self-diagnosed people may also be accused of harming people who have been professionally diagnosed with various disabilities and conditions, and of causing these people to not be taken seriously. (Though some of these real disabled people have pointed out that they aren't taken seriously in the first place.[5])

It's worth pointing out that without a paper diagnosis, people can't access special resources at school or work, so they aren't taking away anything from people with confirmed disabilities.

Acceptance

Some communities show support and acceptance towards people who self-diagnose. This is more common in cases where a diagnosis can be difficult to obtain (e.g. autism). Autistic adults tend to embrace self-diagnosed autistics as part of their community, assuming that the person is likely autistic but unable to access appropriate resources at the moment.[6]

There is some logic behind this. For example, one clinician found that 88% of people who thought they were autistic received an autism diagnosis.[7] Thus, someone who thinks they are autistic is probably correct.

Comparison with factitious disorder

People who self diagnose are sometimes accused of being attention-seeking snowflakes.[8] They may be accused of having factitious disorder (formerly known as Munchausen syndrome), a condition in which a person fakes illness in order to receive sympathy.

However, people with factitious disorder tend to lie and say that they have a professional diagnosis when they do not. They don't say they are self-diagnosed.[9][10] People who self diagnose tend to be honest about it.

Hi, teens!

If you're young and your parents don't listen to you, you may feel like self-diagnosis is the only way to find answers.

Some people do self-diagnose and later have their diagnoses confirmed by a professional. It's also true that you don't need a medical degree to read the DSM 5. However, it's easy to misdiagnose yourself, and miss out on getting the help you need.[11]

Here are some potential risks of self-diagnosis:[12][13]

  • You might misdiagnose yourself, and miss out on proper treatment. For example, if you mistakenly conclude you're autistic when you actually have ADHD, you might never get the chance to try possibly life-changing medication.
  • You might miss overlapping conditions. For example, you might correctly identify your panic disorder, but not realize that you also have asthma and need an inhaler. To further complicate things, some physical conditions cause psychiatric symptoms, so it's important to get checked if you can.
  • You might needlessly scare yourself. You may accidentally over-diagnose yourself (e.g. assuming you have social anxiety and a sleep disorder and PTSD when it's really only PTSD), or you may think you have a much scarier disorder than you actually do (e.g. mistaking a stress headache for a brain tumor).

Also, double-check the symptoms and side effects of any stuff you already know you have. For example, anxiety problems can cause chest pains,[14] so if you know you have an anxiety disorder and your chest hurts, then you might need anxiety treatment instead of an X ray. If you're on any medications, check the most common side effects. You can always make a doctor appointment to check in.

Here are some ways to research wisely:[15]

  • Start with the least deadly, most likely explanation. What's more probable: that your headache is a sign of a fatal brain tumor, or that it's a stress headache and you need a little extra rest?
  • Write a list of your symptoms. Add things as you think of them.
  • Stick to reputable websites. Avoid forums, or biased sources (e.g. Autism Speaks). If you do look there, be skeptical.
  • Find many sources. Don't just rely on one or two.
  • Take your time. Identifying a new condition should take more than 5 minutes. Identifying a lifelong, pre-existing condition may take more than a month.
  • Search conditions that are related to each other. For example, if you notice some signs of sensory processing disorder, also check out ADHD and autism. This is especially important if your doctor believes you have some mental condition, but isn't quite sure what exactly and you've already discussed some potential canditates.
  • Compare the details of each symptom; for example, severe sleep problems can be caused by both ADHD and depression, but in the former they usually manifest as problems falling asleep, while in the latter they usually involve problems staying asleep. Issues with eye contact may be a sign of Asperger's syndrome, but it may also be an ADD brain trying to limit distractons so it can fully power the working memory while talking.
  • If you rule out a related condition, figure out why. For example, "I suspect bipolar disorder instead of BPD because my mood swings are longer and I don't fear abandonment."
  • Print out any self tests that you take. Write your answers in pencil. You can show your answers to the doctor.

You can take your symptom list and self-test sheets to show your doctor. Use tentative language, and ask for the doctor's opinion. Your research can be helpful, as long as you remember that you aren't trying to do the doctor's job for them.

If you don't understand why the doctor is saying something, speak up about it. They may have a reason you aren't aware of. It's also possible that they are misinterpreting you. (Their ability to diagnose you is only as good as the information you give them.) Ask questions and explore the possibilities. The worst case scenario will be that the doctor is a terrible listener, in which case you may be able to get a second opinion.

WikiHow even has diagnostic resources for autism, including how to tell your parents[16] and how to prepare for an assessment.[17] You can adapt these for any condition (not just autism).

Finding information on potential conditions you may have is a good start. Just make sure you do your best to get the help you need (if possible), and avoid a misdiagnosis.

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See also

References
  1. Wikiquote: William Osler
  2. Is the NHS failing women with autism? The Guardian
  3. ADD in women ADDitude Magazine
  4. Black & African American Communities and Mental Health Mental Health America
  5. Autistic Dreams: Why I’m not upset with people who self-diagnose autism
  6. Autistic Dreams: Why I’m not upset with people who self-diagnose autism
  7. Can screening measures for autism in adults predict diagnosis?
  8. NOSMag: Autism self-diagnosis is not special snowflake syndrome
  9. Munchausen syndrome Better Health Victoria
  10. Real Fake Illness ABC
  11. Autistic Dreams: A Confirmed Autistic’s Guide to Self-Diagnosis
  12. The Dangers of Self-diagnosis
  13. Issues and Dangers of Self-Diagnosis
  14. What you need to know about chest pain and anxiety
  15. The Dangers of Online Self-Diagnosis
  16. wikiHow: How to Tell Your Parents You Think You're Autistic
  17. wikiHow: How to Be Ready for an Autism Assessment
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