The All-Important Matter of Compliance

The perspectives on schizophrenia I can provide are not those of a psychiatrist, psychologist or licensed clinical social worker, but rather a consumer and family member. I have walked the walk on both sides of the street. As such, I can speak with experiential authority. It is my objective to share with you, as best I can, what my experience with schizophrenia has been like on a day to day basis, i.e., to compare notes with you. I will also make observations about being a family member and advocate based on my own experience. Any observations or comments you chose to make in return will be of great value.

In this blog, I raise the emotionally charged and, in my experience, all important matter of compliance, i.e., faithfully taking one’s medications as prescribed. Around this central issue revolve a host of related concerns involving providers, family members and consumers, each with their own perspective.

Discussions concerning compliance can become contentious because these different perspectives reflect differing hopes, fears, expectations, objectives and standards of behavior. The consequences for all of the parties involved can be profound.

These various perspectives and their implications may be examined in greater detail in future blogs, but for this first blog on the subject, I simply want to summarize my experience with the core issue of compliance and relate some of my conclusions concerning this subject.

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From the moment I first exhibited symptoms of schizophrenia my condition deteriorated rapidly. In the span of five days the illness had rendered me largely dysfunctional. Miraculously, within five days I was placed on the only neuroleptic then available. This medication did little to alleviate my positive symptoms, such as paranoia, hallucinations and delusions. Nonetheless, I took these faithfully, primarily because of the developing relationship with my psychiatrist, Dr. Levy. (See my last blog for details).

Doctor Levy immediately launched a search for more efficacious medications, all the while working with me to develop coping skills. We tried every new medication introduced over the ensuing ten years. Although this was a tumultuous process, I cooperated because I trusted him implicitly.

With one glaring exception, I have voluntarily remained 100% compliant for over fifty years. However, there have been several incidents, when I was hospitalized for other maladies, that my medications were withheld against my will.

In all the incidents of non-compliance cited above, both voluntary and involuntary, the consequences were devastating. Within three or four days my symptoms returned with a vengeance, especially thought insertions, hallucinations, paranoia and delusions of grandeur. Within seven to ten days, I lost all insight, i.e., I no longer realized I was ill.

By way of illustration, I offer the following two examples: