Family members are often told that the refusal to take psychiatric medication is an irrational reaction driven by their loved one’s mental health symptoms. The term anosognosia, a mystifyingly long and obscure bit of medical verbiage, is often employed. Anosognosia is a word used to describe a lack of insight. Insight is the understanding that one has an illness, and that the products of that illness are not based in objective reality. I am told I have high insight. People who I work with in advocacy seem to marvel at it. They surely intend it as a compliment; these people whose loved ones are so unwell. But my decision to take the meds is much less rational that it seems. It’s actually entirely an emotional decision, based largely on abject terror.
Psychosis is horrible. At least mine is. I find it distasteful to even describe the details. I fear being judged, even by people who are very understanding about mental illness. But suffice it to say that I find florid psychosis to be insufferable in the most literal sense. I would not bear to suffer it. I would go to extreme lengths to make the horror stop.
I have had disturbing intrusive thoughts for as long as I can remember. When I type “I would go to extreme lengths to make the horror stop,” my mind suggests terrible things. And I assent. I would do those things. So I take the medication. The side effects are almost unbearable themselves. I have not taken chemotherapy. But people seem allowed to refuse that. The look at the hell people have gone through, and they decline. They choose to let cancer take them, and to a large extent, people show them understanding. I do not claim to understand every nuance of this decision, but then again, I take the meds. I do as the doctors tell me. My aunt did chemo even though the cancer had already spread to her brain. My uncle said if they had known what chemo was like, they would have taken that money and gone on a cruise. I remember her fondly, though she died when I was very young.
The odds were not in her favor. But then again, they are not in mine. One study I read claimed that 70-90% of people diagnosed with schizophrenia are completely unemployed or totally disabled. I have schizophrenia. I think about that statistic a lot. I have had some dark experiences receiving treatment. The intent to intimidate, in my first hospitalization, was overt. They call it a “show of force” in the psychiatric literature, in case you were ever wondering if there is a technical term for an institution that processes millions of dollars in medical bills hiring moonlighting bouncers to scare that shit out of psychotic teenagers. That number, 70-90%? It includes all of the people who take the medication. It is an open secret in the psychiatric community, that in terms of preventing disability, antipsychotic medication simply does not work for most people. It does, often, mute the positive symptoms of psychosis, delusions and hallucinations and the like. And I am grateful. All I am today is because the medications let me be that. But they do not stop me from being disabled. I am not gainfully employed. I have never held a full time job for more than 11 weeks, at any point in my life. I likely never will. I have accepted that.
I do not truly know their scope of the side effects. I only know them for me. Nor do I know the drug’s effectiveness. I only know that for me. I once heard it described as two opposing spectra, one of the drug’s effectiveness, the other of the intensity of the side effects. I exist at two points on those lines. Other people occupy different ones. If someone told me the drugs only made them worse, there would be nothing I could say to disprove that statement. Their family couldn’t disprove it. Their psychiatrist couldn’t disprove it. And even if the drugs do “work,” they often do not return a person to their previous state. They would likely still be disabled. They might even be more disabled, because of the side effects themselves. I do not claim that no one ever refused to take medication because they did not know they were sick. But I do claim that some refuse to take the medication because it only makes them worse. That experience is real.
I am grateful the medication worked. It made my life less hellish, made me less of a chaos machine that alienates those who try to love him, allowed me the privilege of working on myself as a person. I am very sad that it didn’t allow me to pursue my academic and professional goals. I’m fighting back tears admitting that to a computer screen. I had such hopes for myself. I work part time, even less than many part time workers, as an advocate at NAMI. Sometimes the things I type onto these screens are things I would say to my coworkers that I do not dare; things I would say to the family members we try to educate.
It is not irrational to want your life back. It is not irrational to expect that medications that ravage you with horrible side effects, that make you gain a life shortening amount of weight, that make you pace until you give yourself overuse injuries, that make the muscles in your face tick, that send you to the emergency room multiples times with rashes and dystonic reactions, should actually make you well. Those are all side effects I personally experienced. It is not irrational to ask that these medications allow you to be the person you once dreamed of being, after all that they take. They have not allowed me to do that. I have had to dream another dream. But this essay is not about my persistence, which is a topic I would be happy to never discuss again. It’s about compassion, compassion given to people who make the choice that I did not.
It is, in fact, possible to believe someone is psychotic, but understand that some of the decisions they make are entirely rational.