Over One-Third of Psychiatric Patients Are Misdiagnosed—Here Are Our Stories

It was like nobody put the pieces together

Getting misdiagnosed with the wrong mental illness was like having an itch in my brain that I couldn’t quite scratch.

I knew the itch was there. I could scratch around it, but I was never satisfied. Even the doctors who saw the itch couldn't scratch it either. They told me it was in the right place but never listened to me when I said the opposite.

Eventually, I accepted that they were right about the itch. Because what else could I do? When I told other people about the itch, I used the doctors’ words. “It's right there,” I said, referencing the location the doctors pointed out. It never felt quite right, but there was no other option.

Until a mental health professional finally said, “Wait—you’re scratching the wrong place. Try here.”

And there it was.

My Story

I have schizoaffective disorder bipolar type, which is the love child of schizophrenia and bipolar disorder. It can be difficult to diagnose because it’s characterized by both mood symptoms like bipolar disorder—depression and mania—and psychotic symptoms like schizophrenia (re: hallucinations and delusions).

I’ve been getting treatment for mental health issues since high school. The first diagnosis was clinical depression. And I was depressed, to be fair. I had regular uncontrollable crying spells and a constant low mood, lower than it should have been. I had been suicidal several times. College was torture; I was miserable.

It was easy to see the depression.

But no one asked me about my sleepless nights. Or the strange school assignments, circuitous, complicated, and indicative of some mental oddity. No one asked me about my periods of deep obsession, obsessions that cropped up during episodes of what I would eventually learn was mania. They all just saw the depression, so that's what they treated. I was put on Wellbutrin, an antidepressant, and left to fend for myself.

There were also things I didn’t tell anyone, mainly because I didn’t think they were worth mentioning.

Takeaway

I didn’t tell anyone about the floating lights—the auras I saw or the voices in the night calling my name. I thought everyone experienced these things.

I accepted that I had depression. It explained some things very well. And the Wellbutrin seemed to work, eventually. I had more energy than ever, though I still didn’t need to sleep. I came up with grand and fantastical plans for my future; plans that, if I had shared them with anyone, would have been immediately recognized as ridiculous. (I realized later that all this was indicative of mania, and that antidepressants can cause it in people who have bipolar tendencies.)

But something was missing.

Receiving My First (Mis)diagnosis

At age 22, I had my first psychotic break and was hospitalized for the first time. I had been crawling out of my skin for a week, feeling a deep and unabating discomfort that I had never felt before. Being in my body was painful, excruciatingly painful. Then, in a group therapy session with my therapist (who I had been seeing for individual therapy since my freshman year of college), I started hallucinating. The room turned green, and there was a giant bug in the middle of the room with each of its legs attached to every person sitting around me.

I did not have a psychiatrist at this time. My therapist and I never discussed nor put much stock in diagnoses. But this episode spurred her to send me to Bellevue to try and meet with a psychiatrist. I was then admitted to the hospital against my will, after being coerced into admitting that I had been suicidal in the past. Five days later, I came out with a prescription for Risperdal (an antipsychotic) and another misdiagnosis—bipolar disorder. It was like nobody was putting the pieces together.

"It was like nobody was putting the pieces together."

I went to the hospital to seek help for what was clearly a psychotic episode, but all anybody wanted to focus on was the suicidality and the crawling-out-of-my-skin feeling. Something I later learned was called a “mixed state,” the energy of mania with the low mood of depression.

I was hospitalized again after another mixed state. This time, the assigned doctor believed I had a sensory disorder. Even though I was still on the Risperdal, nobody seemed to care about my psychosis, which had persisted through both hospitalizations.

I didn’t know what was happening to me.

Takeaway

Later on, after I attended graduate school for social work and trained as a mental health professional, I looked back at the decade in which I’d been misdiagnosed and wondered why I didn’t see it sooner.

But, of course, that was not my job. That was my psychiatrist’s job. And they all failed me.

After my first hospitalization, I was sent to a psychiatrist who had no idea how to treat me. He eventually referred me to another psychiatrist who specialized in bipolar disorder. Over eight years, I repeatedly told my doctor about my psychosis, the hallucinations, and delusions I was experiencing. I saw bugs where there weren’t any. So many episodes where I believed my therapist was replaced by body snatchers or I feared going outside because I knew something terrible would happen if I did. And yet, on every invoice was the DSM code for bipolar disorder—Bipolar II, to be exact.

For eight years.

Another Day, A New Diagnosis

Things turned around unexpectedly when my therapist went on maternity leave. She referred me to a colleague of hers who, after a phone consultation, was the first person to hear my story—my years of mood symptoms and psychosis—and think: “That sounds more like schizoaffective disorder.”

We discussed this in our first session, and it was like a lightbulb turned on in my mind.

Schizoaffective disorder is characterized by bouts of depression and mania as well as psychotic episodes. But unlike other disorders (including depression with psychotic features and bipolar with psychotic features) in which mood symptoms and psychotic symptoms occur simultaneously, the mood symptoms and psychotic symptoms in schizoaffective disorder do not necessarily occur at the same time and are not connected. And that was what had been happening to me this entire time. That’s why I never quite “fit” my bipolar diagnosis.

I knew what schizoaffective disorder was because of my social work training, but I had been conditioned for so long to believe I had bipolar disorder that I'd never thought otherwise. I thought I was an anomaly, the exception to the rule.

I had always felt it had been my fault, somehow, for not fitting neatly into the diagnosis so many people had agreed upon.

All of a sudden, a discomfort I never knew I was feeling lifted. Things felt clearer. I didn't have to try squeezing my square-shaped symptoms into a round diagnostic hole and ignore the traits that didn’t make sense in favor of a name—any name—or what I was experiencing. It felt amazing to finally know what was happening to me. My symptoms themselves, of course, did not feel amazing; and they persisted even with the new diagnosis.

Takeaway

But I no longer felt like a misfit. Like a problem that had no solution.

On Acceptance

I fired my psychiatrist. My new doctor accepted my diagnosis of schizoaffective disorder and worked with me within the new diagnostic parameters. Eventually, we landed on a combination of medications that made my symptoms few and far between. For the first time in my adult life, I wasn’t just trying to survive while my brain was on fire, functioning as best I could through the constant pain. Instead, I was thriving. And I truly believe it was because I was finally correctly diagnosed.

Amy's Story

Dr. Amy Marschall is a psychologist from South Dakota living with autism, anxiety, and ADHD. This is her misdiagnosis story.

“In hindsight, there were many flags that I was autistic. I remember in my early 20s a childhood friend told me she was diagnosed autistic recently, and I remember saying, 'That's not autism, we both do that!'”

"Over time, as I learned more about autism (and especially the gender disparities in accurately identifying autistic individuals), I started to suspect that I was autistic also."

“Things came to a head for me in 2020 (which happened for a lot of people, I think!) when I started working from home and realized I was unmasking a lot of things I had held in.”

“It was difficult to find a provider who did autism evaluations for adults, and that challenge is doubled because I'm a mental health provider, so all the local resources already had professional relationships with me.”

“I spoke with a clinic that does autism evaluations primarily with children but was willing to test adults as needed. Although I already knew some of their evaluators from work, they determined the dual relationship was appropriate on the grounds that I couldn't find a provider without a dual relationship.”

And the Test Results Were...

Takeaway

“After eight hours of testing, plus measures I completed before the appointment, collateral information from my husband, and two interviews, they told me I did not meet the diagnostic criteria for autism.”

“They stated that things I identified as stims were actually fidgets (though when I asked how they differentiated, they weren't able to tell me), that I made eye contact during the appointment, that it's rare for autistics to be married (which is not true), and that most autistics do not work full-time. This is technically true, but it does not mean none of us work full-time!).”

“Basically my special interests didn't count because I get paid to engage in them. (Tell that to pretty much every tech CEO!).”

“I was pretty angry because they knew I was married and employed when I applied for the assessment, and they could have saved me a lot of time and money if they had disclosed that they wouldn't diagnose someone like me regardless of what the test results showed.”

“By the way, I completed the ADOS-2, which is largely considered the ‘gold standard’ of autism assessments despite having high rates of false negatives in women. And, my scores indicated that I was autistic.”

Takeaway

“Why did they put me through a massive and expensive assessment measure if they were going to disregard the results based on demographics that, again, they knew before they agreed to test me?”

“I'm still mad about that. Technically I wasn't ‘misdiagnosed’ because they identified I had ADHD and anxiety, which are both accurate diagnoses, but they missed the autism.”

The Test Results Had to be Wrong, Right?

“I remember telling one of my autistic friends that I didn't get the autism diagnosis, and she said, ‘That's bullshit, you're definitely autistic.’ I went down a rabbit hole and actually ended up interviewing 50 autistic people about their diagnostic experience, how their traits went unidentified, etc. I remember joking several times, ‘Imagine what I'd be doing if I had autistic hyper-focus!’”

“Eventually, I went to get a second opinion from a provider recommended by one of the people I interviewed. She re-tested me and indicated that I met the criteria for autism, but that I'm high-masking which makes the traits easy to miss.”

"Neither of these evaluators took insurance, and I paid $1600 total for both assessments."

“The second evaluator gave me a discount, so it was significantly less expensive. But how many people can't afford one assessment, let alone two? This is a big part of why 1) I fully support self-diagnosis and 2) we need to overhaul the diagnostic system to prevent people from getting overlooked for arbitrary reasons.”

An Anonymous Story

I spoke with the therapist of a man who wishes to remain anonymous but wants to share his story of being misdiagnosed.

The man is a biracial African American and white-identifying cis male who was misdiagnosed with anxiety when his actual diagnosis was bipolar II. (BIPOC individuals are often and inordinately misdiagnosed when it comes to mental health and illness).

Takeaway

She says that some of the impacts of this man’s misdiagnosis included being placed on the wrong medication—a common and serious result of a misdiagnosis, especially because so many psychotropic medications have nasty side effects.

Her client believes this has caused issues with his ability to navigate social relationships.

Part of their work together, his therapist says, includes narrative therapy. This type of therapy is empowerment-based, allowing the client to identify their voice and live their true “narrative.” The man and his therapist agreed that narrative therapy important in helping him talk to his psychiatrist and stand up for himself when need be.

This story proves that the effects of a misdiagnosis are far-reaching and can affect someone’s relationship with their mental health professionals, even after a correct diagnosis has been identified.

The Impact of a Misdiagnosis

A misdiagnosis can make you feel gaslit by your providers, especially if you have repeatedly expressed that the diagnosis doesn’t feel right. This creates a charged and challenging relationship between you and your provider and can make it difficult or even impossible to speak up in your sessions and tell them how you really feel.

Which, in turn, might mean you are not getting the level or quality of care that you need and deserve. Psychology and psychiatry are reliant on self-reporting—there aren’t blood tests you can do or scans you can run to figure out which mental illness you have—and if you are unable to openly and accurately self-report, how could your provider possibly know how to help you?

Takeaway

This is what’s so insidious about being misdiagnosed: it can be so hard to tell when something is wrong.

And when your diagnosis is wrong, you might feel wrong. You might be left trying to convert your experiences and symptoms into a description or diagnosis that’s not entirely accurate because you trust and believe your provider (which, ideally, you should!). They’re the expert, right? Wrong—you are the expert, the expert on your own lived experiences. But a misdiagnosis can convince you otherwise.

Another problem with being misdiagnosed is being prescribed the wrong medication, the effects of which can range from annoying to dangerous. Being prescribed an antidepressant from an erroneous depression misdiagnosis can cause mania in people who have bipolar disorder. It’s hard to tell how being on a medication you don’t need can affect your brain and your body. That’s why it’s important to understand all your symptoms and be prescribed the medication that most accurately addresses them.

Related: 6 Signs That You Should Dump Your Psychiatrist, According to a Mental Health Professional

Final Thoughts

Living with a misdiagnosis can feel isolating and disturbing. You might feel as though nobody understands you or knows what to do with you. You might feel as though you are a “problem” that nobody knows how to fix. I certainly felt this way for years.

That’s why it’s so important to advocate for yourself. Explain your symptoms to the best of your ability, and look for alternate explanations if the one given to you does not feel right. Don’t be afraid to seek a second—or third or fourth—opinion. Sometimes, all it takes is determination and the ability to listen to yourself when something feels wrong.

Takeaway

If you or a loved one are struggling with your mental health, contact the Substance Abuse and Mental Health Services Administration (SAMHSA) National Helpline at 1-800-662-4357 for information on support and treatment facilities in your area.

For more mental health resources, see our National Helpline Database.

Read the original article on Verywell Mind.