Columns

Antipsychotic medications and their potential to help people with schizophrenia get well, and remain well, present an enormous hope that humanity once did not have. Before antipsychotics, mentally ill people may have been the "town crazy" or the "town drunk." Before these drugs came about, (Thorazine was the first, and it was discovered in 1950), there was no effective treatment for people with schizophrenia. Sometimes people were given frontal lobotomies, which may have allowed some to become minimally functional, or it may have done no good whatsoever. People died horribly in primitive mental hospitals or on the street. 

Once antipsychotics were discovered, they became the front-line treatment for people with psychosis. As soon as it was apparent that I had psychosis (delusions, hallucinations, bizarre content of speech), I was given antipsychotics. And ultimately, (once I was compliant or was forced to take these medications) these drugs made the difference for me. 

And, with the advent of "second generation antipsychotics" treatment became more effective. At first, they were called "Atypical antipsychotics" because it was falsely believed that this class of drugs did not have the same awful side effects as the earlier medications. 

Many people given a schizophrenic diagnosis are uncooperative with treatment. Why is this? Do they resist the official diagnosis that they have a serious mental illness? Do they lack the insight that something has gone wrong with their mind? These, of course, are two big reasons that would lead people to refuse treatment. 

Many people with schizophrenia become noncompliant because they cannot face the concept that something has gone wrong with their brain. Acknowledging a brain illness is a hard thing to do. It affects self-esteem, and it affects perceived and actual prospects of having an acceptable future. 

Many with schizophrenia resist treatment because they continue to have a significant level of delusions, and this prevents having the insight needed to realize they are ill and came out of many of their delusions through medication. Some do not remain medicated long enough or with enough of a dosage to initially track reality, and this blocks all insight including that of needing medication. 

But there is something else, and it is big. However, before I hit on the main issue, (which you could guess is about medication side effects) I need to say something else. 

I recently refused a refill, temporarily, of one of my antipsychotics, because the pharmacy had been dispensing excessive amounts, and I had developed a stockpile. The result: apparently some kind of record has been generated that I may be noncompliant with medication. This is the sort of thing that peeves me immeasurably. I phoned the pharmacist about it to clear things up, but I don't know if this has any effect. On some computer somewhere, I may have shown up as possibly noncompliant. 

The above assertion is based on this: I received an automated call confirming that I was refusing one of my antipsychotics. It was an unusual phone call, because of how the automated speech was worded, and in the way I was prompted by the automated system to respond. 

Apparently, government is involved in this. Some county agency is probably tracking me and making certain of my compliance. This is in the absence of any court order. Agencies track mentally ill people--that is the only conclusion I can draw. It is not necessarily a bad thing, since the community does not want any incidents. However, I question the authoritarian approach and the invasion into my life. 

Now this: 

The side effects of antipsychotics, for the first few years that you take these drugs, are hell. I cannot put into words the suffering I felt in the early nineteen-eighties, when I began antipsychotics. 

Side effects can include a horrible, drugged sensation in the body. They can feel like a chemically induced straitjacket. They restrict the mind and body, and they cause suffering that cannot be evaded. You can't run away from it. 

The first job I obtained when I was put on meds and released, at age 18, involved physical work. (Doctors had recommended I do the same kind of work that I'd done before hospitalization. This may have been a bad idea.) And when trying to make the ibody work while medicated, you are in a physical battle against the shutting-down effects of antipsychotics. This increases the magnitude of the suffering. 

With typical side effects, it requires an overriding imperative in our minds to get us to commit to taking meds. Sometimes, mindfulness can help with side effects. Sometimes you just have to endure the suffering, because there is no better choice. And making such a decision, to go along with the suffering of antipsychotics, requires a lot of bravery. And readers other than those with mental illness should try to understand these reasons behind noncompliance. 

For readers who have never taken antipsychotics and who are not the designated ill person, you should realize that the commitment to being compliant takes a lot of resolve. And you can offer any support possible, and not criticism, because you yourself probably could never imagine taking these meds, and enduring the diagnosis, the prognosis, and the side effects. A mentally ill person who has stabilized through voluntary compliance is a very brave individual.