Misdiagnosis and self-doubt

ID: A lady with her head in her hands. In the foreground, a faded purple box with the words 'Misdiagnosis and self doubt' written by Just A Square Peg blog

For many, misdiagnosis and self-doubt go arm-in-arm together. They did for me and I bet they do for you too.

Growing up, self-doubt was a casual friend on my shoulder, whispering sour nothings like ‘Are you sure you want to do that? Failing is so embarrassing’ and ‘Do you really think that’s good?’. It’s meant me being a perfectionist for as long as I can remember. If something isn’t perfection, it’s not good enough.

When I was diagnosed with borderline personality disorder (BPD) in 2017, this validated that there was something different about me. Something that affected me more than other ‘normal’ people. I felt that the puzzle had been solved, case cracked and that everything would make a lot more sense.

Except, it didn’t. The self doubt remained.

BPD stigma is unjustified and sad

Much of what I read portrayed people with BPD as ‘manipulative’ and ‘dramatic’ and ‘attention seeking’ with ‘extreme moods’ and ‘high levels of impulsivity’. I started to doubt myself in that moment. Does the doctor really think I’m manipulative? Is she saying that all the struggles I’ve had are because I’m impulsive and need attention??

As I researched more, I got angry at these assumptions and the discrimination surrounding BPD. From stories I’d read of others with BPD, they (like me) just wanted help and support, not to be judged and told ‘there are people more worse off than you love’ (and yes, someone in mental health services told me that when I was at crisis point).

‘Treatment resistent’ is what they said…

My gut thought otherwise but the professionals ‘know best’ so I went with it. I started treatment but nothing seemed to work and tried 10 different types of mental health medication, all of which made me sick. I tried Dialectical Behavioural Therapy (DBT) to help with my ‘behaviour’ but I didn’t understand the course content and I’d meltdown every time I left a group session (in a bright room, with about 10 people, all told we had to ‘share’ – nightmare).

Again, the self-doubt crept in. What if it’s me being awkward and not trying hard enough? Why is nothing working to help me? And why do mental health professionals keep telling me that if I stick to what they tell me, it will change my life? But of course, it didn’t because it was the wrong treatment plan for the wrong diagnosis.

It felt like I was an inconvenience to the mental health system. Anyone who saw me would breathe a big sigh before opening my file, expecting ‘high drama’ when all I wanted was someone to review my diagnosis and treatment plan. But they refused.

It must be me.

Maybe I am ‘treatment resistant.

Maybe they’re right.

Maybe I can’t be helped.

Maybe I do just need to ‘go away and try what we’ve told you’.

Validation!

That was until a psychiatrist told me I’d been misdiagnosed but couldn’t do anything about it. I had to refer myself to the autism assessment service and wait. In the meantime, I still had to take the 500mg dose of Quetiapine because the BPD diagnosis was on my medical record. I protested but she said there was nothing she could do.

My self-doubt breathed a sigh of relief knowing that actually, I was on the right track all along. I knew that something wasn’t right with the diagnosis. But, despite that, they STILL wouldn’t help me. There was no urgency. No manner of ‘oh my goodness, we need to sort this out ASAP’. Nothing. They just said to keep taking the incredibly high dose of antipsychotic medication (that I later discovered, I’ve never needed) and be on my way.

Self-diagnosis both helped and hindered

My counsellor mentioned autistic self-diagnosis to me and I was dubious but when she explained that it could really help me to understand myself, I went with it. And I’m glad I did. However, when one of my Instagram reels took off at the rate of knots, my self-doubt was fuelled by self-diagnosis doubters.

You’re not autistic just because you say you are’

‘You’re taking services away from those who need them’

‘You pretending to be autistic harms our community which you’re not a part of’

Of course, my self-doubt responded in the only way it knew how, ‘Yep, they’re right y’know’.

But deep down, I knew this wasn’t about anyone else. It was about me learning more about myself and what accommodations I needed to give me in order to survive in a world not meant for me.

Diagnosis didn’t help initially…

When I was finally diagnosed as autistic and with combined type ADHD in December 2021, I had mixed feelings.

Relief. Anger. Grief. Satisfaction. Exhaustion.

I assumed (wrongly) that when your initial diagnosis is proven to be wrong and needs correcting, that the NHS would make that happen. Instead, I got ghosted. I got ghosted by the National Health Service. They wouldn’t talk to me. When I called and asked to come and give them the reports so I could book an appointment with a psychiatrist they said ‘no’ and ‘we don’t need those reports for your file’.

My response…

“So, you don’t need the ADHD and autism reports that prove I’ve been misdiagnosed with a mental health condition I don’t have?”

Their response…

Tumble weed. “Give them to your doctor, they can sort it out.”

They STILL refused to believe I’d been misdiagnosed. They fuelled my self-doubt through gaslighting me. Told me they knew best. They ‘always know best’ – apparently.

Perseverance pays

So, in true ‘me’ fashion, I became a pain in the health service’s arse. I complained to the health board and my local member of parliament. I tagged them in social posts and was telling my story to anyone who would listen. The worst part is I’m not alone.

Which is why I ended up in a meeting with the health board and the local member of parliament recently to share the following points:

  • I got misdiagnosed with BPD instead of autism and ADHD but no one re-assessed me.
  • I had two reports from autism and ADHD experts saying I didn’t have BPD and that it should be taken off my records.
  • My file of information was empty and then conveniently went missing on my next appointment
  • No one knows how to signpost adults with ADHD who want to be assessed.

Basically, it’s a shit show. But obviously, I was more diplomatic than that.

Misdiagnosis and self-doubt come arm in arm

When you’ve felt ‘wrong’ your whole life and then someone gives that feeling a label, it can change your life. It can give you a whole new perspective and means you can share your experiences with others who are struggling. But then you’re told, nope, the label is wrong. You feel like you’ve been lying to not just yourself but all those people who looked to you for guidance and insight. It gives you crippling self-doubt.

Mental health misdiagnosis isn’t just ‘Oops, sorry wrong label’, it’s much more than that. It can have a huge impact on someone’s life. I was so highly medicated at one point that I couldn’t drive, couldn’t exercise and couldn’t work either. All because I had (what I now know) to be an autistic meltdown. The health service thought I was delusional and preferred to stick to that narrative.

If you suspect misdiagnosis, talk to someone. It could be family or friends to begin with or your GP (if you like and trust them). Arrange an appointment with your GP and go through why you think you’ve been misdiagnosed. Ask if you can be reviewed by a mental health professional who should look at your diagnosis and your medication too. 

Please note: The above information is from personal experience. I’m not a medical professional and simply share what helped me at the time. If you need more information visit the Mind website or the NHS site.

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