Citizens Commission on Human Rights
National Affairs Office
Washington, DC

How antipsychotic drugs are used is challenged by research reporting on the negative effect on patients’ sense of self and on the possibility of worse social functioning and quality of life from long-term use for some patients.

Citizens Commission on Human Rights (CCHR) is calling attention to new reports on the risks from taking antipsychotic drugs, including damaging or erasing the patients’ sense of identity and interfering with their recovery from their mental health issues. 

A brief report published in the Community Mental Health Journal discusses how taking antipsychotic drugs, or even being prescribed but not taking the drugs, can be experienced as “damaging, erasing and dulling people’s sense of who they are.”  The report refers to this risk as “the adverse effect no one is talking about.”

In one study, 70% of antipsychotic users reported they did not recall their prescriber telling them anything at all about side effects before they started taking the drugs.

The researchers behind the report call for more attention to be given to the effect of antipsychotics on identity and the sense of self, to prevent interference with mental health patients’ recovery and their chance to live well, “where what constitutes living well is defined by the individual rather than decided for them by their clinical team.”

Challenging the belief that people with psychotic mental health issues need to take antipsychotic drugs for life, a separate study has tentatively indicated that stopping an antipsychotic drug rather than continuing to take it long-term for “maintenance” may result in better long-term social functioning and quality of life. 

The researchers note that many patients do not want to continue taking antipsychotics and decide on their own at a high rate to discontinue the drugs for reasons that include the serious side effects of the drugs.  Patients can perceive these effects of antipsychotics as worse than the mental health condition for which they are taking the drugs.

“One reason for a more cautious attitude are the adverse medication effects such as weight gain, sedation, insomnia, and metabolic and cardio-vascular complications that have a negative impact on patients’ quality of life and impede long-term social functioning,” the researchers wrote. 

A 2019 study took a closer look at the side effects of antipsychotic drugs.  Patients taking the drugs reported an average of 11 adverse effects, with an average of five of them rated as “severe.”  

The most frequent side effects were drowsiness/feeling tired/sedation (92% of patients), loss of motivation (86%), slowed thoughts (86%), and emotional numbing (85%).  Nearly three out of four (74%) experienced loss of sex drive, and over half (58%) reported suicidal thoughts or actions.  Older people reported high levels of side effects.  

Among the disturbing findings was that most (70%) of the antipsychotic users reported they did not recall their prescriber telling them anything at all about side effects before they started taking the drugs.

Because consumers can only make fully informed decisions about taking or discontinuing psychiatric drugs when they are given accurate information about the known risks of the drugs, CCHR encourages patients to insist on getting full disclosure of those risks and to discuss those risks with their prescribers.

WARNING:  Anyone wishing to discontinue or change the dose of an antipsychotic or other psychiatric drug is cautioned to do so only under the supervision of a physician because of potentially dangerous withdrawal symptoms.