Hi! I have post-traumatic stress disorder (PTSD).
I’ve never been formally diagnosed with it, but I know I have it.
I never managed to get a professional, clinical diagnosis for PTSD.
This is partly because I struggled to find a consistent and qualified counselor who was willing to diagnose me.
A few of my therapists didn’t want to diagnose me because they didn’t want me to get “held up” on a diagnosis, despite the fact that I wanted some kind of label and language so that I could articulate my pain.
I decided that I needed to start calling it PTSD.
I self-diagnosed. But this doesn’t mean my PTSD is any less real. It definitely doesn’t mean that it’s any less severe.
Many people are, however, skeptical of self-diagnosis – and sometimes, for good reason. In the mental health community, we often talk about the values and downsides of self-diagnosis. It’s a complicated conversation that deserves more attention from the outside than it gets.
Here are two reasons why people are skeptical when it comes to self-diagnosing mental illnesses.
1. Misdiagnoses Are Real
One of the biggest issues with self-diagnosing is that you might misdiagnose yourself.
Yes, professionals also misdiagnose a lot of people – but they’re certainly less likely to make a misdiagnosis.
I recently spoke to someone who strongly suspected they had bipolar disorder, only to find out they had borderline personality disorder (BPD) after a few years of therapy.
Their self-diagnosis was ultimately based on misconceptions about bipolar disorder. They assumed that their sudden, inexplicable shifts in behavior, mood, and personality was because of bipolar, which is often equated with being temperamental, unstable, and inconsistent.
This view of bipolar disorder is reinforced by misrepresentation in the media, as well as the flippant way we use the term as an adjective to describe anything from inconsistent weather to a person who often changes their mind.
In reality, they had mistaken the symptoms of BPD for bipolar disorder.
BPD is characterized by intense and unstable relationships, impulsive and possibly dangerous behaviors, feelings of emptiness, highly changeable moods, and a fear of abandonment – all symptoms that might seem similar to our perceptions of bipolar disorder.
In this case, this can be quite dangerous. The treatment for bipolar disorder is way different to the treatment for borderline personality disorder.
You might also think you have a mental illness when there’s actually a physical cause of your symptoms.
This is explained well in this article:
One of the greatest dangers of self-diagnosis in psychological syndromes is that you may miss a medical disease that masquerades as a psychiatric syndrome. Thus, if you have panic disorder, you may miss the diagnosis of hyperthyroidism or an irregular heartbeat. Even more serious is the fact that some brain tumors may present with changes in personality or psychosis or even depression.
If you assume you have depression and treat it with an over-the-counter preparation, you may completely miss a medical syndrome. Even if you do not want conventional treatment for depression, you may want conventional treatment for a brain tumor.
In this case, it will be futile to try coping methods for panic disorder or depression when you need some kind of physical treatment to help you.
This can be physically dangerous, and it might discourage you from seeking treatment.
2. A Diagnosis Without Support Can Make You Feel Awful
For those of us who tend to obsess over our health and our symptoms, self-diagnosis can be a ticket to panic city.
Especially when you use the internet to diagnose yourself.
This is because there’s a lot of information out there on mental health. This information can be useful, but it can also be really difficult to navigate.
For example, if you have a personality disorder like borderline personality disorder or narcissistic personality disorder, you might realize that these mental illnesses get a lot of hate – even in mental health communities.
Reading about these misconceptions can make you feel awful. Without the guidance of a trained professional, you might struggle with self-acceptance.
Additionally, it’s important to remember that diagnosis is obviously not the end goal of therapy. The goal is healing, and you might need some professional guidance with that. If you’re diagnosed with something, but you don’t know what the next step is, you can end up feeling hopeless.
Of course, if you’re diagnosed by a professional, there’s never a guarantee that they’ll be able to provide you with some support – but it’s likely that they will. If you self-diagnose, you’re likely to be left without the support and guidance of a professional.
Those concerns are all really valid and important. They’re certainly things we need to keep in mind when we approach the topic of mental illness.
That said, there are lots of reasons why people decide to self-diagnose regardless – and there are lots of reasons why self-diagnosis is valuable. And folks who are staunchly anti-self diagnosis often don’t take these points into consideration.
So here are a few reasons why self-diagnosis might be useful for people, especially those who are marginalized.
1. Self-Diagnosing Can Help Marginalized People Discuss Their Experiences
In many ways, professional diagnoses are usually only available for the privileged.
That’s because most marginalized people seldom have access to compassionate, comprehensive, professional mental healthcare.
It’s difficult to access if you don’t have money to pay for healthcare, or if you can’t travel far because you don’t have reliable access to transportation, or if you’re queer or trans or intersex and can’t find a therapist that is accepting of your identities.
Finding a therapist who isn’t bigoted against us is a challenge.
For this reason, being judgmental towards people who have self-diagnosed – or implying that we’re not really mentally ill – often ends up hurting the most marginalized people.
2. It Can Help Us Accept Our Illnesses
Something really fantastic happened when I accepted that I had PTSD: My mentality switched from There’s something severely wrong with me and I’m a bad person to I have an illness and I need help.
When I had flashbacks, I started recognizing that they were a result of my trauma and not a result of me being silly. I wasn’t simply hung up on something that happened years before; I had a mental illness as a result of my trauma.
Similarly, knowing I was depressed made me realize I didn’t simply need to “be positive” in order to overcome my chronic feelings of sadness and emptiness. Knowing I had anxiety made me realize I didn’t need to “just stop worrying and relax,” but that I needed a holistic, multi-pronged approach to treating my condition.
In other words, I stopped viewing myself as a failure and started trying to heal.
Would I have been able to reach that level of acceptance if I waited around for a diagnosis? I’m not sure. But I do know that accepting my mental illness was something I had to do before I could truly love myself.
For many people, realizing you have a mental illness is a relief. It’s a step towards self-acceptance, and thus a step towards healing. It helps us realize that we need to find treatment, support, and resources instead of simply engaging in self-hatred.
And if self-diagnosis is what we need to do in order to find that acceptance, we should be welcoming and kind towards those who self-diagnose.
3. It Helps Us Find Resources and Community
Self-diagnosing enables us to reach out to other folks who have mental illnesses; we can form a community where we support one another and exchange management tips and resources.
Once you self-diagnose with an anxiety disorder, for example, you might Google “tips for dealing with work pressure when you have an anxiety disorder” or “how to explain my anxiety disorder to a loved one.”
You might also find and join anxiety support groups – online or offline – which can help you feel less alone.
Battling mental illnesses can be draining and isolating. Having a community of some sort can be super valuable and healing.
It will help us feel less like outsiders, and more like we belong.
Is self-diagnosing good? Naturally, there isn’t a straightforward answer to this question.
But in a world where mental health care is inaccessible for many, it’s pretty understandable why folks try to diagnose themselves.
The best we can do is be welcoming and understanding towards self-diagnosed mentally ill people, while being aware of the downsides of diagnosis.
Sian Ferguson is a Contributing Writer for Everyday Feminism and a full-time freelance writer based in South Africa. Her work has been featured on various sites, including Ravishly, MassRoots, Matador Network, and more. She’s particularly interested in writing about queer issues, misogyny, healing after sexual trauma and rape culture. You can follow her on Twitter @sianfergs and read her articles here.