“This condition is so devastating that it will cause serious changes to your life and to those around you,” says Josef Witt-Doerring, a psychiatrist and former medical officer for the US Food and Drug Administration.
Simon’s experience adds to an increasing body of research that seems to show that although millions of people take SSRIs with no ill-effects, the pills aren’t always the harmless panacea doctors have been making them out to be. The Panorama investigation examines whether these drugs have lived up to their promises, following patients who have suffered serious side effects – among them, PSSD. Simon Wright helped the programme makers with their research.
Research in the Journal of Urology published in 2006 found PSSD affected 4 per cent of people who had taken SSRIs. Then, earlier this year, a study in the Annals of General Psychiatry found that one in 216 people who have taken them experience sexual dysfunction long after discontinuing the drugs. In the UK, there are 8.3 million people on the drugs, and 50 million in America. This could mean as many as 230,000 US citizens and 40,000 UK citizens suffering from PSSD.
Wright first started taking SSRIs shortly after leaving university. “I was a happy, slightly reckless teenager, into fast cars, with a healthy sex drive,” he remembers. “But on graduating, I started to feel anxious, with low self-esteem. I wasn’t eating that well, or looking after myself. Added to this, there’s lots of pressure on young men these days – a real competition to prove ourselves – and perhaps I felt this more than most.”
Then, Wright received the news that his uncle had committed suicide. “I was devastated,” he says. “Then I started to worry there might be some sort of dysfunction that ran in the family,” he says. “I had heard talk of ‘low serotonin levels’, and thought this might apply to me.”
Wright made an appointment with a GP, supported by his mother, a nurse. “Within five minutes, after barely asking any questions, the doctor prescribed me citalopram,” says Wright. “Twenty-four hours later, I started feeling strange. I started having intrusive, macabre thoughts, as well as extreme tiredness. I also noticed a numbness in my genital area. Though this side-effect wasn’t listed on the leaflet that came with the pills, I assumed it would be temporary.”
As well as the lack of sexual sensation, Wright suffered “emotional numbing” – an inability to feel pleasure of any kind. The doctor told him he simply needed more time on the tablets and doubled the dose.
At the end of 2012, Wright went on an 18-month trip to Thailand and Australia. “Everything I thought would make me happy – from working on a banana farm to scuba diving and surfing – left me cold,” he says. During the trip, he had an 18-month relationship with an Australian woman, but struggled for emotional connection: he felt “zombified”. His sex life with his girlfriend also suffered.
“I was able to get an erection and would love kissing, but was never able to feel anything during penetrative sex, and my desire soon died,” he says. “I did try to discuss it, but didn’t link my lack of sensation to the antidepressants. Sex almost felt like ticking a box. At one point, I even started questioning my sexuality.”
Looking back, Wright feels “an immense sense of grief and repeat trauma” that he has never been able to develop a normal relationship, a situation he is sure is down to the drugs. “This must have confused and upset my girlfriends, when it was in fact the antidepressants’ side-effects,” he says.
Over the course of a decade, Wright would be on and off SSRIs. He says that at no point did any doctor or psychiatrist question the possible effects of the drugs on his symptoms, even as his sexual dysfunction worsened. Instead, he was simply switched between SSRIs, with his despair attributed to factors such as low serotonin levels and the heartbreak of a relationship ending.
Finally, in June 2022, Wright finally decided to quit the drugs permanently, “tapering” them slowly over an extended period. But his symptoms remained.
Last Christmas, Wright discovered the PSSD Network – a patient-run community of men and women all over the world, including a Reddit group of nearly 8,000 members, all of whom have experienced similar symptoms after being prescribed SSRIs.
“When I saw some people had found their symptoms became permanent, I went through a lot of anger and denial, at times I even felt suicidal,” says Wright. “Then I began to realise I wasn’t on my own, that there was something I could do, and joined the PSSD Network as a volunteer, helping to grow its Twitter and TikTok following.” During this period, Wright came across the work of Prof David Healy, one of the world’s experts in SSRIs and the harm they can cause some people.
“We’ve known about this problem for about 60 years, from when the first antidepressants came out,” says Prof Healy. “Doctors could recognise that the drugs were having an impact on your ability to make love.” He feels that the number of people suffering from PSSD illustrates that there needs to be a change in medical practice regarding the prescribing of antidepressants. “We put people on SSRIs too easily,” he says. “When you give these drugs to people who are mildly depressed and anxious, this can lead to worse problems. If you cause PSSD, you’re going to lead to a bunch of people committing suicide because they feel that they can’t live this way.”
While PSSD has been reported to regulators in the US and the UK since 1991, it took until June 2019 before the condition was finally given official recognition by the European Medicines Agency.
So desperate have PSSD sufferers become with the lack of attention to their plight from the mainstream medical community, they have begun to crowdfund their own research. The PSSD community has raised more than US$100,000 ($161,000) towards the search for a cure, in partnership with scientists at the University of Milan.
Simon Wright has undergone a battery of tests to try to understand what has gone wrong. “I know I’m far from alone in suffering this condition, but I still don’t know what to do,” he says. “I’ve seen endocrinologists, I’ve been tested for Asperger’s, but my results came back normal. I recently paid £2,644 ($5,455), most of my life savings, to see a neurologist, and am still waiting to have a small nerve fibre biopsy to assess whether I have permanent nerve damage.”
Simon is determined to find a solution, but every day brings anguish. “I don’t want to accept this situation, I don’t think I ever will,” he says. “Part of me thinks this is all my fault – that by taking antidepressants, I feel I was unknowingly self-harming for 10 years of my life. This haunts me. I’m currently single. People ask if I’m worried I won’t be able to start a family: I can’t even think about kids right now. As far as I’m concerned, I haven’t had my 20s yet. I feel trapped at 22, in a 33-year-old’s body.”
He feels that going public with his story is the only way to draw attention to the desperate situation that he is in, along with the many other people battling PSSD around the world.
“Why would I go public about such a personal situation as this? Because patients need to be warned that they could be permanently damaged by their antidepressants. They should be given informed consent. People are killing themselves because of this condition – SSRIs are being prescribed to younger and younger people, some as young as 12. If I can stop this happening to just one other person, it will have been worth it.”