I was initially destabilised when I was prevented from collecting my prescription (venlafaxine and mirtazapine) for 5 days as it wasn’t available at the chemist. I was riddled with agitation and despair, which I tried to channel into physical work.

When I finally got my prescription I had hoped I would settle down but this did not happen. I approached the mental health team and explained what had happened and how my symptoms would not settle down and I was treated like a child and told to go home and keep taking my medication. My usual psychiatrist and CPN (Community Psychiatric Nurse) had moved area in the big changes that were happening then and there was nobody left that knew me.

After 7 months of feeling really unwell and not being heard or taken seriously, [I spoke to Dr.A], and told him I wanted to stop taking this medication as I was horrified at the reaction it had caused me for the last 7 months and he gave me instructions on how to withdraw, by taking them every other day and then cutting the dose in half every other week, which I did and seemed to be okish for a few weeks, then horrific withdrawal symptoms kicked in that I thought was serotonin syndrome, turned into full blown terrifying akathisia.

I went back to [Dr. A] and told him that I was going through hell, and explained the myriad of symptoms I was experiencing and he tried to give me other medication, which I refused as I was now terrified of taking anything else and he told me he could no longer treat me and I was struck off the mental health team. I experienced horrific akathisia for over a year and was unable to leave the house and I still have iatrogenic injuries, almost 7 years later.

I have Multiple Chemical Sensitivities (any perfumes make my thyroid swell and cause migraines) I have to wear a mask in any public areas (fabric softeners and perfumy product wreck me.) I also suffer with chronic fatigue and am very sensitive to stress which wipes me out etc. I have, sadly been unable to get back to work because of this. I can no longer live the life I loved.

I recently found out through getting my medical records as I wanted to see how the last 6 years had been recorded, that [Dr. A’s] final gift to me was labelling me with paranoid personality disorder. He had not heard of akathisia, he was not aware of any side effects linked with the withdrawal of these meds.

I have approached my GP about this incorrect diagnosis and was treated with ridicule and subtle threats of a schizophrenia label. I feel completely traumatised by the mental health teams lack of knowledge of their medications and proper withdrawal procedures, they only know how to dish them out like sweeties and totally gaslight anyone who questions or disagrees with them

Speak your truth: your own experiences can help create change

If you want to share your experiences around this diagnosis you can take part in Platfform’s Truth Project.

Platfform are campaigning for a review of the use of the diagnosis of PD. Add your voice to our call for change by sharing your story. We will share these with Welsh Government and use them to strengthen our campaign.

For more information, and to access the survey, click here.

If you are in a mental health crisis, please read this paragraph

If you have been affected by anything in this story and would like to talk to someone you can call Samaritans on 116 123. You can also call the national mental health support line for advice on 111 (press 2.)