The purpose of this article is to highlight the reasons why some individuals stop taking anti-psychotic medication, against the advice of family, friends and doctors. My purpose here is not to rally sympathy for a mass shooter who has stopped taking his medication. My purpose is not to discuss the merits or the risks of taking anti-psychotics to begin with. In fact we have, generally speaking, two large camps when it comes to public opinion. There are those who are strongly opposed to the use of any mood stabilizers or anti-psychotics. And there are those who are strongly in favor of their use, even to the point of having them administered involuntarily. Both parties have good, sound reasons for their stance. And I sit there right on the fence, given my experiences, observations and advocacy for the seriously mentally ill.

My objective is to inform those who do not have direct experience or knowledge of why on Earth someone would stop taking medication that is supposed to help them function in the world. Taking anti-psychotics of any kind are always a risk. There are no physical exams or blood tests which can guide the psychiatrist in which medications they prescribe. It is still a process of trial by error. And get this: the psychiatrist often decides what medication to prescribe, based on just 10-15 minutes of conversation with the mentally ill person!

Is the mentally ill person capable of giving the doctor accurate, objective input? If you are reading this and want to make an impact in the world, then jump at any chance to help change the laws which prevent family members from interacting with mental health providers on behalf of their sick relative. When it comes to mental illness, the current HIPAA privacy laws make things worse!

It can actually take years for a perfect “cocktail” of medications to be achieved and even then, the body chemistry changes and a person who once responded well to certain meds will no longer at some point, as if to build an immunity against them. Some people respond better to medication than others. For some, taking medication can make the difference between being able to function in the world or not. For some it can make the difference between being able to work or live independently, or not. For some, taking the right medication can make the difference between hearing voices and having hallucinations, or not.

The general public is not aware that part of serious mental illness includes “lack of insight” or anosognosia. In other words, a person with serious mental illness, like schizophrenia, is not “in denial” that they have problems. They really are not aware that their reality is different, any more than the average person would accept a diagnosis they do not feel they have.

About 50% of all people with schizophrenia are not aware they are mentally ill, even if their circumstances in life would prove otherwise. It is also very common for a mentally ill person to have a substance abuse disorder. This is where the real fireworks begin. The illicit drugs, like crystal meth, can create an aggressive reaction on their own, and they also diminish or cancel out the effectiveness of the medication.

Given the fact that so many mentally ill people do not think they are ill, it is actually impressive that so many do take medications! They may be humoring their family members or they may be feeling intimidated into doing so, and still be compliant. But there are also some very “sane” reasons why a person will go off their medication and those are what I want to touch upon here.

Firstly, when a person has no insight into their illness, like a person with Alzheimer’s, they may assume that at some point in time they can go off their medication, just like you or I discontinuing a medication or anti-biotic when our physical illness or symptoms come to an end. This is so common; it is a cliché that mentally ill people want to go off their medication when they are feeling better. And if they don’t titrate off the meds slowly, they could easily have a psychotic break and relapse.

However, just as common, people go off their medication because of the serious side-effects they have endured. And if you don’t think you need to be on the medication in the first place, why would you continue when they cause so many other problems? Ask yourself: if you did not think you were ill, but you got strong-armed into taking medication to appease your family, your doctor, or your parole officer, would you continue with them if you struggled with serious side effects?

What kinds of side-effects? The list is long, but can include: gaining a tremendous amount of weight, feeling so tired that you need to sleep 12-15 hours per day, becoming sexually impotent, having no interest in doing anything and feeling dull or emotionally flat, being constipated, drooling, shaking like you have Parkinson’s disease, getting high blood pressure and high cholesterol, a compromised immune system, risk of death or seizure, and having to take counter medications for the side effects, which have their own side-effects!

And with all the medications, you might STILL experience auditory and visual hallucinations! Why would any “normal” person put up with that? So, if you ever feel frustrated or outraged that someone you know or someone in the News went “off their meds,” perhaps you will have a little more insight into why that routinely happens.

As far as anti-psychotic medication goes, we are still not hitting the bull’s eye in terms of effective medications without formidable side effects. There are no “magic pills” which can take a person who is seriously mentally ill and deliver them to a place where they are completely symptom-free, and without experiencing side effects.

 

Kartar Diamond is a mental illness advocate and author of Noah’s Schizophrenia: A Mother’s Search for Truth.