What It’s Like to Go Undiagnosed or Misdiagnosed

September 5, 2019 August 25, 2022
What's it like to go undiagnosed/misdiagnosed with mental illness?

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.

Book cover: Making Sense of Psychiatric Diagnosis by Ashley L. Peterson

Making Sense of Psychiatric Diagnosis aims to cut through the misunderstanding and stigma, drawing on the DSM-5 diagnostic criteria and guest narratives to present mental illness as it really is.

It’s available on Amazon and Google Play.

So you've just been diagnosed with... [ mental illness]

The So You’ve Just Been Diagnosed with… [a Mental Disorder] page brings together information, advice, and resources from people who’ve been there. New input is always welcome!

31 thoughts on “What It’s Like to Go Undiagnosed or Misdiagnosed”

  1. jumandi64

    Hi .I would be interested in connecting with you via email .
    Is that possible for you ?
    I understand if not
    I will look forward to hearing from you
    Kind Regards Mandy

    Reply
  4. Luftmentsch

    Thanks for quoting me! I would add that I still don’t have a formal ASD diagnosis and am still waiting for re-assessment. I’m supposed to have it some time this year…

    I don’t know what the situation is like under other healthcare systems (private or different forms of state-paid healthcare), but my experience of the NHS is that it’s a lottery as to whether you get a psychiatrist who is willing to listen to you and take on board what you’re saying or one who just tries to bulldozer through you and get to the next patient, imposing their views of what your problems are (and sometimes they can go from the former to the latter).

    I don’t want to judge. The NHS is under-resourced and could only be under-resourced (if something is free, the demand is going to be enormous), and psychiatry is not always seen as a key area in funding reviews. Waiting lists are long (hence my wait for re-assessment) and there is a lot of political pressure to keep them down by getting through as many patients as possible. Violence and abuse against psychiatrists and other mental health professionals are not unknown. I appreciate that psychiatrists are under a lot of stress. But the service as a whole often ends up being sub-par. This was clear at both the depression support group and the OCD support group I used to attend, that a lot depended on luck as to whether you got an understanding GP or psychiatrist.

    Reply
    1. ashleyleia

      I think it’s probably a bit of a crapshoot wherever one is as to whether a doctor will be skilled and/or understanding, but an under-resourced system certainly can’t help.

      Reply
  7. Mira - The Handy Journal

    This is very hard, being misdiagnosed or even undiagnosed and what it makes you go through !
    Physician should keep in mind a broader differential diagnosis especially when it come to mental health, but also diagnosing such a disorders sometimes can be really hard even for psychiatrist! Thank you for sharing such these personal experiences !

    Reply
  10. lavenderandlevity

    I totally connect with both the awful open office story and with Elle Rose talking about having trauma, dissociation and ADHD ignored because everything is just “depression.” I’m getting to the pkint where of a blogger is like “I wonder if I have X, Y, Z” I’ll yry to list every *other* possible thing it seems like it might even possibly be and tell them to really explore all options because if they don’t, it’s no guarantee their doctor will in the fifteen minutes they get with them.

    Reply
  11. Michelle

    I can understand how difficult that can be. I have looked at many different mental disorders and found that many overlap. There are key symptoms though to help. In my opinion, not all psychologists are well trained in mental health disorders.

    Reply

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