Submitted by a parent of a PSSD sufferer
E.B.
BC, Canada
Adult child suffering PSSD for 1 year
From a parent:
I am a Canadian parent of a young adult who is suffering greatly from PSSD. They have given me permission to share their story with others under anonymity. I absolutely believe that this is a very real and tragic disorder caused by SSRI antidepressants. The disorder has traumatized my child, leaving them in a constant state of despair and hopelessness and by extension has also caused much worry and stress for the rest of the family. This is my family’s story:
During their teen years my child began to suffer from depression. I’ve gone over and over my memories of those times to try to figure out what I did wrong as a parent, or if there is a family genetic link to depression… In the end, the specifics aren’t important to this story but what is relevant is that when I turned to books and the internet to learn about depression, I kept reading that “If depression symptoms persist, seek help”…which is what led me to taking my 16-year-old to a psychiatrist.
Relieved that I’d done the right thing to help my child and trusting that a professional would know what to do, I took a step back. Our family met once or twice together with the doctor but otherwise it was quite clear that I was expected to respect the doctor/patient confidential relationship of my now almost-adult child. So while I was aware that an anti-depressant drug had been prescribed to correct a “chemical imbalance”, I didn’t pry or do a deep dive into researching what SSRIs were, how they worked or what the side effects were. I didn’t even know that SSRIs were not recommended for under-18-year-olds. I am angry at myself now for abdicating my responsibility to protect my child, but at the time I didn’t know to ask questions.
Over time, their depression lifted, and I thought that everything was now okay. Life went on for them, as the high school years morphed into independent travels, summer jobs, moving to attend college and a first sweetheart. I knew the SSRI was still being prescribed, but any of my queries about whether perhaps they could now be discontinued were met with assurances that they were helping to keep their mood stable and that some people take them for years, even for life. Antidepressant medication was often compared to insulin for diabetics: it was necessary to correct for a biological problem. Again, because various doctors through the years kept rewriting the SSRI prescription, I assumed this was good standard practice and I made no effort to research the potential adverse effects of using SSRIs.
I wouldn’t expect an adult child to discuss their sex life with me, so of course had no idea that they had been experiencing troubling sexual dysfunction symptoms while on the SSRIs. I have since learned that they weren’t even warned by any doctors about this very common adverse side effect. But eventually these side effects led them, under medical supervision, to taper off the drugs. Very shortly afterwards, all their physical sexual sensations as well as their capacity to experience romantic feelings and emotions of love were quite suddenly and completely gone. A medical exam revealed no obvious cause, and the doctor didn’t have any answers. Searching the internet for answers to what was happening they found a name for what they were suffering from: PSSD. I can only imagine their mounting horror as, completely alone with their despair, they learned from a computer screen that there is no known cure and that for many people the symptoms endure indefinitely.
As time passed with no return of their sexuality, a deep soul-sucking grief and overwhelming hopelessness engulfed them. The trajectory that they had been on of growing up into an independent young person following their goals was completely derailed. University studies were abandoned, jobs were few and short-lived, they bounced around living here and there, and there was no hope for any romantic relationships. Eventually they moved back home. But life back in the family home became tense. The once enthusiastic, creative, happy person I’d known had been replaced by an angry, moody, isolated, deeply unhappy person.
I’m thankful that they found the courage to reveal to me what had happened to them and how traumatized they were. At least now I had some explanation for the disturbing behavior. My initial reaction was to believe what they told me, yet I did not immediately grasp the depth of their despair. I made the mistake of diminishing their situation by saying things like “terrible things happen to people all the time and they overcome” or “there’s more to life than sex”. I didn’t mean to be cruel, in fact I intended to be hopeful. It took many conversations for me to understand that their very sense of self, their core essence of who they were had been stripped from them. I am gradually learning to just listen and to keep trying to understand. They explained that in addition to the physical damage, the emotional blunting has left them feeling flat, unable to experience happiness, nor to feel wonder and joy nor to get excited and motivated about anything. But it is the complete elimination of any ability to feel romantic love or attraction that causes them the greatest distress: our very existence as humans depends on our finding partners, bonding with others, maybe having a family someday. At every turn, be it a novel, a song or a movie, there are depictions of people in love and every time they see it, they feel an intense stab of regret and anger that they have been robbed of participating in this basic and essential aspect of life. They say that without any hope of love ever being a part of their life, it just doesn’t seem to be worth living anymore.
Now that I know about what has happened, I am more compassionate when my live-in adult child displays a range of very alarming behaviours. I’ve spent nights lying awake while they pace wildly through the house in a rage of despair, often slamming fists into walls and furniture. I’ve seen dents in the walls where they’ve smashed their head against it, even giving themselves mild (I hope just mild) concussions. I hear sobs or even a mournful keening coming from behind closed doors, but I’m at a loss as to how to comfort. I’ve turned aside, trying not to cry, when I see that they have clawed at their face, raising rows of welts.
The closest comparison I have found to describe how I’m trying to be there for them comes from people who are caregivers to a loved-one who has dementia or suffered brain damage. They cope by fiercely loving the person they know to be the real person inside and accepting that the upsetting behaviours, hurtful words or emotional distance are the fault of the disorder and are not intentional or personal. When there is a good day or a just good hour, it is cause for celebration.
I was a parent who believed I was doing right by my child to allow them to take SSRI anti-depressants as a first-line treatment. I feel it my responsibility to reach out to other parents and warn them that these powerful drugs should be the very last resort, not the first-line treatment. To those who are reading this because their loved-one has revealed that they are suffering from PSSD, I urge you to hold fast to your loyalty and love for them, believe them, try to understand as best you can and then get angry at the situation, not the person. If we all band together and raise some hell, we stand of chance of helping find a cure and preventing others from suffering the same fate.
E.B. – a mother