While I’ve talked about how the diagnosis process is one of guessing and checking, I want to emphasize that in most cases, it’s essential to have a doctor be involved in the process.
We, as laypeople, don’t have access to all the information or tools needed to be in any way sure that our interpretation is correct, and we also have our own biases and blind spots that can keep us from correctly diagnosing ourselves.
The initial dangers of self-diagnosis
I’m sure most of us have self-diagnosed at some point, or at least gone to WebMD or a similar site and run a symptom checker.
The results for even the mildest of symptoms tend to be disturbing, with at least a few deadly and/or progressive conditions popping up. These lists of possibilities also tend to be psychologically impactful, increasing your awareness of the symptoms and fear or anxiety about what’s going on.
Many doctors and psychologists during their training go through a period of self-diagnosing with a lot of the conditions they study.
For many of us, simply reading about certain symptoms can cause us to experience them, leading to a sense of impending doom and a deeply seated fear that we have whatever we are reading about.
Reading about these possibilities can often be stressful, and often incite more fear and anxiety than we had prior to looking up the symptoms.
It’s also often very hard to do any form of differential diagnosis without access to the appropriate tests.
Also, as we are only truly familiar with our own bodies, it’s harder to recognize any particular patterns that a doctor likely would.
As I’ve said, running things through some form of symptom checker or doing a bit of investigation on our own is something most of us have done at some point.
While often anxiety-producing, it’s not a horrible thing to do. However, your next step after that search should be to talk to a medical professional so that they can help you weed through the possibilities and identify the condition you actually have.
The longer-term risk of self-diagnosis
If something is wrong with you, it’s important to understand and treat it sooner rather than later.
Most health issues are easier and less complicated to treat early on, and considerably less likely to be deadly. All too often, we ignore these options.
This is what wellness appointments and preventative screenings are all about.
If you believe you have a particular condition, there’s a fairly good chance that you’re wrong. Even if you are correct, you don’t have a way to understand its severity or to get the appropriate treatments, except for seeing a doctor and confirming your diagnosis.
Most conditions get worse if left untreated, and many treatments that don’t require a prescription (such as dietary changes or over-the-counter medications) either mask symptoms (without treating the underlying problem) or have additional risks associated with long-term use or participation.
Most medications have both the ability to heal and hurt, and taking medications inappropriately can be extremely risky. Lately, there have been stories about people finding treatments that have similar names to medications and dying as a result of misusing their selected treatments.
From relatively minor issues, like knowing if you have a viral infection (which often cannot be treated) or a bacterial one (which antibiotics can help) to more severe, long-term concerns (do you have heartburn or stomach cancer; is your head pain a migraine or a stroke symptom?) there are many concerns that only diagnostic testing can help—and self-diagnosing without seeing the doctor will prevent you from getting the correct treatment or the peace of mind that comes with knowing what’s wrong.
When seeing your doctor doesn’t seem like enough
Now, if you are seeing a doctor, it isn’t so bad to do some research into possible diagnoses or to better understand the diagnosis (or diagnoses) your doctor has suggested.
Not all doctors are created equal, and in some cases, you’ll end up seeing a doctor (or several doctors) that may make mistakes, have biases, or otherwise fail to get you to your correct diagnosis.
This is why I’m a big fan of doctor shopping and of getting a second opinion. and do what I can to warn of the dangers of misdiagnosis.
Our healthcare system is pretty broken, and so there are many opportunities for your doctor or your insurance provider (if you have insurance) to let you down.
I can understand the fear of the potential expenses and the fear of the doctor’s ineptitude, especially since so many of us with chronic conditions are dealing with medical trauma.
However, the solution to these issues isn’t to self-diagnose, but instead to keep searching until you find doctors who will work with you and are prepared to do the research and understand the possible diagnoses and what options have been disproven through diagnostic testing.
For example, when my migraines shifted from occasional to constant, my doctors double-checked that there wasn’t something more severe going on.
My trip to the Emergency Department included a CAT scan of my head to check for signs of bleeding or other damage, and my neurologist, who specialized in headaches, had me get a series of MRIs (with and without contrast) to make absolutely certain that there wasn’t any physical damage to my brain that might require more invasive treatment.
Those negative results are very reassuring to me. Also, if I’d had any of that sort of damage and hadn’t been tested for it, I may have suffered more severe damage before seeking treatment.
If you feel like your doctor isn’t listening to you, the answer isn’t to give up on doctors.
Instead, you’ll likely want to focus your energy on finding a doctor who better understands your condition (or symptoms), or on finding a doctor who is better able to work with you.
While this isn’t always easy, it certainly is possible—and, unfortunately, while dealing with our currently broken system, the responsibility for finding the right doctor does indeed fall on your shoulders.
When self-diagnosis may make sense
I try to manage my statements and respect the entire disabled community. One group within the disabled community that often does need to self-diagnose and for whom self-diagnosis feels quite valid is the autism spectrum community.
Autism isn’t precisely a medical condition but instead goes under the disability label because of access and stigma issues.
While there are a lot of tools and accommodations for autistic people, autism itself isn’t an illness that needs to be treated, but instead a collection of sensory sensitivities that can impact how autistic people interact with the world around them.
These may be outside of the “standard” range, but it’s not something to be cured; it’s simply a difference.
Many more people are being diagnosed with autism spectrum disorder (ASD) than previously, and this diagnosis is more likely to occur in children. For children, there are therapeutic treatments that can help them better interact with the world, and while some interventions may be useful for adults, most adults who weren’t diagnosed when younger have learned to mask many of their symptoms.
For many adults with these traits, officially getting the diagnosis won’t particularly help them and isn’t easy to do, but by recognizing these features in themselves and identifying with this community, they gain much self-insight and can better understand the challenges that often have plagued their lives.
For many autistic people, self-diagnoses and identifying within the autistic community can greatly help their mental health and give them useful conceptual tools and possibly accommodations to help their quality of life, but there are few treatments, no cure, and no need for medical intervention.
Recognizing when to get medical help is important
While I’ve written a post about when to see your doctor, I want to emphasize a few points here when it comes to self-diagnosis.
If you think something is seriously wrong with you, you need to see a doctor.
If you are considering severely changing your behavior or expectations for yourself, then you really should see a doctor to confirm the necessity of those changes.
For example, going gluten-free is extremely helpful for people with celiac disease. However, if you don’t have a gluten sensitivity, all that removing gluten from your diet will do is add to your mental workload. Gluten is perfectly safe and healthy, as long as you aren’t sensitive to it.
Most chronic symptoms are a sign that something more is wrong—and often going to the doctor is the first step toward identifying the problem and learning if there is something that can be done to manage it.
I understand that lack of insurance or low-quality insurance can make it hard to get the care you need, but it’s much better, in the long run, to invest in seeing the doctor.
If you see the doctor sooner, your condition can be properly identified and may never become disabling.
If it’s going to be disabling, you have a better chance for a better quality of life by being seen sooner rather than later—and if you’re going to become unable to work, you’ll have much more and better quality evidence of your disability, which will greatly improve your odds of getting onto SSDI or SSI should you need them.
You have everything to lose and nothing to gain by avoiding necessary medical appointments.
Self-diagnosis as a tool to improve your odds
Staying home and assuming that your symptoms translate into a specific condition without testing or otherwise confirming your diagnosis is dangerous, ill-advised, and unhealthy.
Trying to treat your assumed condition or making major life decisions based on such an assumption is only going to hurt you.
However, there are times when you can use a bit of your own research and guesses, combined with test results and medical information, to help with your own diagnosis process.
As doctors rule out certain possible diagnoses, you may hit a point where your doctor may not be aware of the condition you have. Or you may have something rare that requires tests that your doctor hasn’t considered.
Possibilities like that may lead you to do some research on additional possible diagnoses.
Also, participating in discussion groups about your diagnosis or similar diagnoses may give you some other avenues to explore in terms of what you have.
There’s nothing wrong with doing that kind of investigative research, and if you have a diagnosis, but not a treatment plan, there’s nothing wrong with learning about different treatment options.
However, what you don’t want to do is assume you have the condition you learned about without discussing it with a doctor—or trying a treatment without careful consideration and discussion with your doctor.
See your doctor and discuss the evidence, possibilities, and testing procedures. Or if you want to try a different treatment, discuss the suggestions with them.
Ideally, you’ll want to have scientific papers or other reliable information(like information from a nonprofit focused on your condition) to back up your claim, rather than “this person in my discussion group said.”
Conclusion: do your homework, but don’t jump to conclusions
It’s in your best interest to be and stay under a doctor’s care.
Self-diagnosing is a risky business and one that could end in tragedy.
You don’t have the ability to appropriately test your theories or have the perspective or experience to be able to definitively confirm or deny your theories.
Treating yourself without discussing it with a doctor can be deadly, and most over-the-counter medications only minimize symptoms rather than treat the underlying problem.
Too often, symptoms are an indicator of more severe problems, and you need diagnostic testing to rule out (or in) those more deadly possibilities.
While seeing a doctor can be expensive (and/or frightening), getting the proper diagnosis and treatment saves your health, and your finances, in the long run by either documenting or preventing your disability.
While there are a few exceptions (like autism) generally self-diagnosing keeps you from getting the necessary treatment and increases the risk of long-term damage to your body and/or mental health.
It’s vital that you understand when a trip to the doctor is necessary.
It’s very helpful to see the experts on your potential condition when possible so that they can more quickly confirm (or deny) your diagnosis, rather than seeing a doctor who isn’t familiar and so cannot firmly rule out (or in) your possible condition.
You absolutely can (and should) research your possible diagnosis to better understand it and see how well it fits your symptoms, and there’s nothing wrong with seeking out an alternative explanation.
However, it shouldn’t be acted on until/unless your doctor agrees with you on this issue. You need to prove your theory, not just have one.
When you take these possibilities seriously and do your research, you are improving your odds of being properly diagnosed and/or finding the treatment that works for you.
That may include seeking out a doctor who specializes in that diagnosis or in that treatment. However, you want to make sure that you’re staying with reputable doctors and proven treatments.
You deserve to be diagnosed correctly and given a treatment that actually helps you—just make sure that in the process you’re still getting appropriate medical care and double-checking the quality of your treatment options.
I agree, I hear people saying they have self-diagnosed certain issues and then bought over the counter medications or used those of friends and family and it seems to risky. Only a doctor with training can effectively diagnose most conditions.
Precisely! There are a lot of nightmare stories about people dying from inappropriately treating conditions they may not have had in the first place. Masking symptoms with things like over-the-counter medication can be useful AFTER getting a diagnosis, but is only going to lead to more damage BEFORE understanding what’s wrong. I’m always careful when discussing symptoms with others to say “it reminds me” “I think/suspect” and similar terms, and follow up with “check with your doctor” for precisely these reasons. I’m a layperson with experience with my condition and how it impacts my body. I can’t know what’s happening in yours – and my diagnosis was reached through a lot of testing that disproved other hypotheses – it’s vital that others have testing to disprove(or validate) medical theories too.
My brother-in-law self diagnosed his back pain as getting old and being a trucker. It lasted a long time and finally he went to the doctor. It was too late to try any treatment because the pancreatic cancer was to advanced.
I hear to many stories like this one. So many illnesses have nearly the same list of symptoms.
Katie – exactly! I’m so sorry to hear about your brother-in-law’s death. Dr. Schneider also died of pancreatic cancer – it’s one of the forms of cancer that has very minimal symptoms, and generally by the time there are recognized symptoms it’s because the cancer has metastasized and is impacting additional organs. Stomach cancer is another sneaky one, where the initial symptoms are very easily dismissed as ongoing heartburn or other relatively minor inconveniences. My partner Al is at higher risk for stomach cancer because of his autoimmune disorder, so he will need to have endoscopies every few years to double-check for signs of cancer.
I put this post together precisely because too many people go too far in one direction or the other when it comes to symptoms – ignoring them is unhelpful, and assuming the worst is too. We all need to listen to our bodies and then see the right medical professional when we need to, even if it feels unaffordable or challenging – or like an overreaction.