Navigating the Waters of Mental Health Misdiagnosis

Originally published June 18, 2021. Updated May 1, 2024.

Content Warning: borderline personality disorder, autism, depression, anxiety

Being diagnosed with a mental health condition is life-changing. Sometimes, your life changes for the better. Sometimes it’s hard. But what if the diagnosis you’ve been given is wrong?

Since I was little, I’ve always struggled to fit in. Throughout school, kids thought I was weird. I was a bully’s dream – anxious, weedy and easy to pick on. In truth, I hated school. I couldn’t wait to leave.

During this time, my mental health suffered. I was depressed, filled with anxiety and was angry a lot.

It continued as a grown-up where the anxiety worsened and insecurities began. In 2010, I had a mental breakdown and was diagnosed with depression. I was put on anti-depressants and started to see a therapist. It helped me to talk to someone about the thoughts in my head and not feel judged.

Getting a (Mis)Diagnosis

In 2017, after years of muddling through, I had another breakdown.

This time, I was diagnosed with borderline personality disorder (BPD). BPD is a condition categorized by erratic mood swings, impulsivity and feelings of abandonment.

When I was diagnosed, the psychiatrist asked if I thought the diagnosis fit. I thought it was a strange question but went with it because she was the professional. What did I know? I had a disordered personality, according to the professionals.

Related: Journeying Through Borderline Personality Disorder

I felt relieved at the time and went off to research this new label I’d been given. I noticed quite quickly that the information about BPD was so negative and stigmatizing, with some websites questioning if it was a real diagnosis. As I read through the traits of the condition, something didn’t sit right with me. It sounded like me, but at the same time, it really didn’t.

I spoke to my therapist, who has always thought I was autistic. I said that I couldn’t be because the psychiatrists had said it was BPD. She encouraged me to get a private assessment for autism.

So, I paid, went along, and after three gruelling sessions, the psychologist told me that I wasn’t autistic, even though I identified with so many more of the traits and had proof of it. She was dismissive and told me her decision was final. I felt deflated, but she was a professional, so she must know best.

Revisiting the Diagnosis

Fast forward to 2020, and like so many other people across the world, the coronavirus pandemic negatively impacted my mental health. I felt depressed and extremely anxious, and I started binge eating to help myself feel better.

After contacting the local mental health team, I was assigned a therapist for six weeks to see if that would help my anxiety.

She helped me to fight for a virtual appointment with a psychiatrist.

In the UK, the National Health Service (NHS) runs mental health services and can be accessed for free. It’s great, except that they’re pretty stretched, and waiting times can be very long. I waited eight months for an appointment, and when I spoke to someone in November, it didn’t go the way I thought.

We were chatting about my BPD diagnosis when she said, “Has anyone ever mentioned that you might be autistic?”

I told her about my previous assessment, and she said, “I have a horrible feeling you’ve been misdiagnosed. I don’t think you have BPD. I think you’re autistic. I’m so sorry this has happened.”

I was so upset. I cried a lot. The psychiatrist was comforting and said, “Thank you for persevering. Keep going; you’ll get there, I promise.”

But that didn’t make me feel any better. I just kept wondering how this had been missed for 33 years.

I know now that it’s difficult for women to get a diagnosis because we hide our traits pretty well. My therapist had been right all along. She’s autistic and said she spotted it in me the first time I saw her – avoiding eye contact, chewing the inside of my cheek, not knowing when to talk in conversations and telling her about my latest intense interests.

Adjusting to My Autism Diagnosis

Since finding out that I’m autistic, I’ve been trying to find out as much as possible about it. I’ve felt like I don’t know who I am.

I know that labels aren’t everything, but to me, they matter. They mean getting the right support. They mean being able to ask for adjustments at work if needed. They mean having the correct medication if needed.

According to the National Autistic Society, for every three males recognized as autistic, one woman is diagnosed. Also, 42% of females are misdiagnosed with mental health conditions like BPD, anxiety, and OCD instead of being recognized as autistic.

Navigating the waters of mental health misdiagnosis is not easy, and I feel for anyone going through it. However, there is light at the end of the tunnel.

By being persistent and not giving up, I am on the way to knowing myself better. There are many great books out there that help explain what being autistic is like and how autistic people navigate the world. Social media has been so useful in terms of autistic female content creators, who share their experiences that have resonated so much with me.

Something I’ve learned along the way is not to give up, that being persistent does pay off, and that medical professionals aren’t always right, even though they try their hardest.

Despite being misdiagnosed, I have such respect and admiration for mental health teams everywhere trying to provide help and support to so many people struggling during this pandemic.

Thanks to those medical and therapy professionals who spotted my autistic behaviours, I’m now on the road to a formal diagnosis, which will hopefully help me even more with accepting myself and my life as a square peg.