Mental health misdiagnosis affects me in a big way.
Firstly, I have to apologise for going AWOL these past few months. There’s been a lot going on, in my headspace and otherwise. Which is why I wanted to write this post about how mental health misdiagnosis affects me. The most frustrating thing? Medical professionals I’ve seen don’t seem that worried.
I’m not going to insult your intelligence by telling you what misdiagnosis is so I’ve come up with a list of words to describe it instead:
Now, I’ve put ‘unintentional’ on the end because 90% of the time, it’s not done on purpose. None of the medical professionals I’ve seen in the past 10 years have misdiagnosed me on purpose. They have all followed each other’s lead and generally agreed with each other. This is all well and good, except when YOU don’t agree with THEM.
And this is where it started.
Borderline personality disorder… Really?
In October 2017, when I was diagnosed with borderline personality disorder/emotionally unstable personality disorder (BPD/EUPD), I was so relieved that what I’d been going through my whole life had a name attached to it. I remember going home and breaking down in tears with relief that I had a name for what was happening which meant I could try and help myself through it.
But, when I spoke to my private counsellor, she didn’t agree. In fact, she thought I was autistic.
After a very disheartening autism assessment in December 2017 where the woman told me categorically that I was not autistic because my traits weren’t ‘male’ enough, my eye contact was ‘too good’ and I wasn’t struggling enough. I tried to question it but she was having none of it. That was the end of discussion. So I left it there.
My counsellor continued to support me, all the while telling me not to give up. She knew, deep down, that BPD/EUPD wasn’t right, and was lost at what to do because the NHS psychiatrist who diagnosed me wouldn’t re-assess me. She refused. And things went downhill from there.
I continued to struggle in life, at work, and in relationships. I struggled with my overwhelming emotions and couldn’t really verbalise what was happening because I didn’t know what the feelings were. Every time I contacted the NHS for help, my anti-psychotic medication was increased. At one point, it hit the 800mg mark. I was like a zombie and I couldn’t work, I couldn’t exercise, I couldn’t think. I lived in the Quetiapine fog for a long time.
Finally, after fighting with the NHS, making a complaint and getting hold of someone who could help, I had an appointment with a psychiatrist. A different one to the brainiac who diagnosed BPD. For the first time in three years, someone other than my counsellor said “I’ve got a feeling you’ve been misdiagnosed. I think you might be autistic.”
I lived in misdiagnosis limbo from November 2020 until November 2021. I was told my diagnosis wasn’t right, that I had to be assessed for autism and that I was on a waiting list. However, my medication remained the same. The doctor wouldn’t budge on changing it. I couldn’t understand how they left me on medication I didn’t need for a condition I didn’t have.
Throughout 2021, I read everything there was to know about being autistic and looked into the idea of self-diagnosis.
In my research, I came across a self-test for ADHD and took it. The questions and results indicated a strong possibility of ADHD. I made my fiancé read all the questions, then my mum and stepdad. We finally agreed I should be assessed but it had to be private. Doctors and the local mental health team wouldn’t believe me or even listen when I asked for an NHS ADHD assessment. So much so, I lodged a written complaint. I had a reply which was at best wishy-washy. Very Boris Johnson.
It said something along the lines of:
- A service is being introduced in the autumn…but we don’t know when.
- We can’t assess you now
- By writing this complaint, you’re not on a waiting list
- Please try again later
- Have a nice life
Ok, so I improvised the last point.
ADHD and me
To cut a long story short, my family paid, I got assessed, and was diagnosed with combined-type ADHD. In December 2021, I had an NHS autism assessment and was formally diagnosed.
I contacted the mental health team on three different occasions to ask if they’d like my reports for their records. Each time they said ‘No we don’t need it love. Give it to your GP’. So I did.
The private ADHD report recommended:
- Blood tests and heart checks ready for the prescription of ADHD medication
- Come off the anxiety medication I was on (Duloxetine) and the Quetiapine
- To get the BPD diagnosis taken off my records because it was wrong.
- See an NHS psychiatrist
- Have the right medication
I got the first two done. The other three were harder to sort. For those, I had to wait another three months.
And when the day finally came, the psychiatrist wasn’t sure why I was there. He had no records in my file and no idea why I thought I had BPD. After a stressful hour, he prescribed the ADHD medication and off I went.
They made me jittery, I couldn’t sleep and I kept forgetting to eat. Not ideal.
So, Mum and I went back for Round Two. I say that because I was ready to knock someone’s teeth out (pumped on Concerta stimulant medication).
Different psychiatrist and again he asked why I was there. I didn’t lose my shit as much as last time but it was close. STILL there were no medical records, no file and no ideas. However, he was really nice and interested in what had been going on.
He looked up from his notepad and said “I’m not entirely sure why you have BPD/EUPD as a diagnosis because you definitely don’t have it. I can see it clearly. It’s definitely ADHD and autism too.”
After five years, someone FINALLY validated what I’d known all along. I HAD been misdiagnosed. My counsellor WAS right. And my gut feeling was SPOT ON.
My mental health misdiagnosis affects me…
And it will continue to affect me because:
- No medical professional listened when I asked them to
- I’ve had the wrong diagnosis for five years
- The medication I’ve been taking is wrong (and has made me lose jobs and put on a lot of weight)
- Nobody could signpost me to services for support or guidance
- It’s made me suspicious of mental health services
- No one has said sorry.
The last point is a biggie. Yes, psychiatrists have said they thought it was wrong but weren’t sure. They’ve defended their own decisions and looked out for each other.
But who, medically, was looking out for me? I’m so lucky to have the best fiancé, the most supportive parents, family and friends. Colleagues have been incredibly understanding and my counsellor has listened to my misdiagnosis woes and fight for five years.
What if you’re someone who isn’t as lucky? Who doesn’t have someone in your corner?
Instead of health services defending their decisions, they should be accepting responsibility and listening to the bad effects mental health misdiagnosis can have on someone and help to put it right.
So people aren’t losing huge chunks of their lives they can never get back.