Daryl’s Story

I was a very sporty and healthy child, however I was diagnosed with OCD and Tourette’s Syndrome when the conditions were very bad and hospitialized around 10 years old. My OCD and TS is involves body movements, vocal noises and repetitive rituals and my symptoms tend to wax and wane. I saw the best experts in child psychiatry of which continued medication use of antipsychotics and antidepressants (SSRI) were deemed amazing, scientific and safe. This became a normalized lifetime regimen and practically no psychiatrist or doctor I saw for 11 years brought up any question with that. In fact, in my London Borough you are discharged from mental health services if you refuse to take medicatons. The experts spent time convincing my parents of the safety of these medications by assuring them that if there were any problems they would be simply resolved by just coming off them. I have a haunting false memory of me signing a document in a room there, but apparently that was not me.

I watched cartoon depictions there once a week with my key worker on a CD produced by OCD Action (and a drug company as I remember it) that my mum had bought from the worlds leading OCD/TS Maudsley Michael Rutter Centre where I was also treated. It explained OCD was caused by a chemical imbalance of Serotonin receptors in my brain and antidepressants (SSRI’s) corrected it. It has now been established that this was promoted without scientific founding. OCD Action UK has prominent speakers at it’s AGM that includes MP Johnny Mercer the Head of the official Parliamentary Group on Mental Health whose itenary is provided for by Rethink Mental Illness, a mental health charity that receives funding from pharmaceutical companies.

In 2011, setting my first forrays out in to the adult world at 21 years old, my previously extremely alert genital arousal function simply failed to respond, and any manually achieved erection died instantly. I was scared and felt strangely empty, but remained positive that things would resolve. I brought this up at at my next psychiatrists appointment. The psychiatrist  said they are well aware of these issues with these medications and suggested it was probably that so advised me to obtain a blood test from my GPs and then come off of them. My blood tests showed lengthy pituatary and thyroid abnormalities and at my next psychiatry appointment my psychiatrist said yes come off them and the sexual dysfunction will go away.

Little did he know I had already started doing so. I had started initially by chopping the tablets into smaller pieces with a pair of artwork scissors however I could not with one concsious cell continue to ingest a substance that were making my genitals numbed and impotent at the young age of 21. I had battled a whole childhood of mental hospital institutions, special needs schools, odd aleniating visually observable physical disability, social isolation/outkasting and bullying… I wasn’t about to give up on my dreams of living a fulfilling and full, free, normal adult life now!

Weeks past, the most intense withdrawal symptoms I had heard nothing of gate crashed my existence. They included bizzare rebound appearances of spontaneous instantaneous orgasms/ejaculations for no reasons in public, medically referred to as Persistent Gential Arousal Disorder (PGAD) and Brain Zap sensations among other things. At least I knew it was the medications (causing it). I braced myself and held my nerve. At my next psychiatrist s  appointment I asked how long it would take for my erections to go back to normal and he said about a few weeks not longer, but he didn’t seem to really know.

Months passed and the withdrawal symptoms gradually waned some more but my erections had still not returned. I found that when I looked at an attractive woman, there was no physical response.

I asked at my next appointment how long it would take again, this time the psychiatrist said sometimes it can take months, maybe more. One friend who lived in a home run by a mental health housing charity invited me to a service user ask questions about your medications day so I went.  I asked the representative “how long will it take for my sexual functioning to return? It’s been nearly a year off medications already”. She replied that she did not know but will ask a psychiatrist and get back to me (she never did) . The question was put to the rest of the room of who else was suffering from sexual dysfunction because of their medications. To my surprise in their bravery, almost all of the room started to gradually raise their hands. They were mostly older than me, I felt very out of place for my age.

A few months later at the next psychiatrists appointment the whole mental health team including support workers, counsellors and the local GP clinic simply denied this permanent harm was possible and they have maintained that stance ever since. There was no help to get compensation, refusal to record my version of events in the minutes/reports and continual refusal to my requests for any written apology to assist me in moving forward.

I feel completely targeted, abused and harmed with Post-SSRI Sexual Dysfunction by government outreach for having visually observable disabilities since childhood. It has significantly further alienated and depressed my whole adult life, sense of self and my right to a private life. Dignity is not how I view life born in the UK for any child in my situation suffering disability. That ship left me a long time ago. I do however feel that people would care if they knew that these things were happening and things would change. I still contend life with Post-SSRI Sexual Dysfunction 10 years later today.