What It’s Like to Go Undiagnosed or Misdiagnosed

Getting a mental illness diagnosis can be hard, but getting the wrong diagnosis or going undiagnosed can be even harder. Unfortunately, that’s something that a lot of people struggling with their mental health end up going through at one point or another.

Here are a few excerpts from my book Making Sense of Psychiatric Diagnosis on the subject of being misdiagnosed or undiagnosed.

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

During my first hospitalization, I was misdiagnosed as having borderline personality traits. I was a ‘difficult’ patient, and ‘difficult’ patients were automatically deemed by this psychiatrist to have borderline personality disorder. Please keep your stigma out of my medical record.

– Ashley, major depressive disorder

Thanks to the guest contributors for sharing their stories. Have you ever had the experience of going undiagnosed or being misdiagnosed?

You may also be interested in the post When There’s Inaccurate Information on Your Psych Medical Record.