Going Undiagnosed or Misdiagnosed with Mental Illness

It can take a while to get the proper diagnosis

Getting a mental illness diagnosis can be hard, but getting the wrong diagnosis or going undiagnosed for an extended period of time can be even harder. It likely happens more than you think.

It was twelve years ago when mental illness smashed its way into my brain. I’m a mental health nurse, so I was able to recognize that I had the symptoms of major depressive disorder, but I didn’t want anyone else getting involved.

Things got bad enough that I tried to end my life. I ended up in hospital, and was transferred from emergency to a medical unit, where I was seen by a psychiatrist from the consult liaison service. I absolutely did not want to be admitted to psychiatry, and I put on a good enough act that I was diagnosed with adjustment disorder and discharged.

Maybe if that psychiatrist had been a little more on the ball, I wouldn’t have encountered him a couple of months later when I was back in hospital after another suicide attempt and really, really sick.

This particular psychiatrist was pretty much an all-around ass, and he managed to get it wrong again when it came to diagnosis. Sure, he got the major depressive disorder that time. However, because I was a “difficult” patient (which had a great deal to do with him being an ass), he diagnosed borderline personality traits.

That would be fine if it was true. Such a thing should not be diagnosed based on a cross-sectional presentation. Maladaptive personality traits are consistent across time and contexts. While it’s inappropriate, it’s not unusual for borderline labels to be applied because patients are “difficult”. Thanks, but keep your stigma out of my medical record.

I’m certainly not alone in my experience of problems with diagnosis. Here are some excerpts from contributors to my newly published book Making Sense of Psychiatric Diagnosis on the subject:

“It was frustrating, but my issues over the years haven’t always lined up neatly with one diagnosis. It’s been hard for healthcare providers to separate my personal problems (such as the stress I experienced as a child and the extreme family drama I could never escape) from my innate mental illnesses.” — Meg, schizophrenia

“I spent three months working in an open-plan office which turned out to be unbearable and to my shame, my work here was poor. I just couldn’t cope. Suddenly a formal autism diagnosis seemed to be vital, partly to get adjustments at work, but even more for my self-esteem, so that I didn’t feel like a freak who had two degrees, but who couldn’t hold down even an entry-level job.” — Luftmentsch, autism spectrum disorder

“Sexism, it seems, played a far greater role in my treatment than critical thinking. Even when I saw doctors who were capable, they focused primarily on the depression, either downplaying the importance of dissociation and ADHD or ignoring both altogether as symptoms that would simply go away when the depression was treated… All my doctors had completely ignored the probable presence of PTSD or another trauma induced disorder. I began my quest to find a professional who would listen to my experiences and do some critical thinking of their own about my findings. It was a long, difficult process, and I’m still grieving the years of my life it took away from me.” — Elle Rose, depersonalization/derealization disorder

Getting a correct diagnosis matters, not just for the label itself, but as a framework for understanding one’s own illness experiences. Sometimes arriving at the most appropriate diagnosis can be difficult, but if the person who is unwell is pointing out a mismatch, mental health professionals shouldn’t be jumping to the conclusion that the reason for that mismatch is lack of insight on the part of the person with the illness.

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Mental health blogger | MH Nurse | Living with depression | Author of 3 books, latest is Managing the Depression Puzzle | mentalhealthathome.org

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