There are various factors which may contribute to the relatively unknown status of PSSD:

1. Confusion over symptoms. Some PSSD sufferers do not realize their condition has been caused by their antidepressants. Some only make the connection between their medication and the onset of their dysfunction months or even years in retrospect. The fact that the medical community is not widely educated about PSSD means that patients do not get this information from their doctors.

2. Varying levels of severity. While some people with PSSD experience a total loss of sexuality along with numbness and anhedonia, others may experience relatively mild libido loss. They may put this down to other factors eg, diet, aging.

3. Unwillingness to discuss sexual dysfunction, on the part of both patient and doctor. Many PSSD sufferers stay silent about their symptoms for years before seeking help, and when they do they are often met with dismissal and discomfort from healthcare professionals.

4. Devaluation of sexuality. When trying to communicate our distress to loved ones and medical professionals, we are often met with the attitude that what we have lost is not really that important. Some of us have been told that we must simply get over it, or that our numbed genitals and total loss of sexuality is “not that big of a deal.”

5. Unwillingness of the media to cover stories of PSSD. For example, the BBC had intended to air a documentary about the effects of antidepressants on sexuality in 2019 which included discussion of PSSD, but decided not to because they were afraid of discouraging people from taking their medications: https://rxisk.org/the-politics-of-pssd/

6. The idea that it’s so rare it’s not a priority to discuss. PSSD may be very rare, or it might be much more common than most think. Until much wider research is undertaken it is impossible to say either way. However, no matter how rare it is, patients have the right to informed consent, especially considering the sometimes life-changing severity of PSSD.

7. The view that speaking openly about PSSD would discourage people from seeking psychiatric help for depression. Some of us have encountered this line of thinking, which holds that since PSSD sufferers are in the minority, it is irresponsible to spread the word about our condition because it may scare people out of taking the antidepressants which many have found to be helpful. However, this notion is antithetical to the principals of informed consent, bodily autonomy and human rights. We are real people whose lives have been severely impacted, not numbers that can be brushed aside for the sake of the greater good.

 Anybody who thinks that they may be suffering from PSSD is encouraged to view the studies in our “Resources” section, and either print copies or download the PDF files for their healthcare professional to review. The unfortunate reality is that while your doctor may dismiss your subjective experience, it is much more difficult to dismiss science supporting what you are telling them.

Recognizing that one has PSSD can be incredibly distressing. Being brushed off, or worse, shamed, when bringing one’s concern to their doctor, a person who is trusted to look out for the best interests of their patients, makes things even worse. Unfortunately, what appears to be the majority of doctors are unaware of the existence of PSSD. In some cases they are not open to the possibility and dismiss the condition as being psychosomatic (“It’s in your head” or “Your sexual dysfunction is a manifestation of your anxiety/depression”) . In some cases, they may be open to the possibility of such a condition, but have no idea how to treat it. Whether PSSD is a truly rare iatrogenic disease or simply under-reported due to varying degrees of symptom severity and willingness to discuss with healthcare professionals among sufferers, the existence of PSSD can no longer be disputed.