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:
Example #1 - In the last quarter of my senior year of college at the University of Washington, I met a beautiful young woman and we fell madly in love. Our relationship was intense in all respects. In that same quarter I was awarded a highly coveted fellowship from National Institute of Health that would have fully funded all the graduate studies (and living expenses) at the University of North Carolina required for me to earn a PhD. in child psychology, a subject of great interest to me.
My love and I were not yet ready for marriage, so I did not believe I had the right to ask her to take leave of her friends and family to follow me to North Carolina. Yet the prospect of being separated by three thousand miles for extended periods threatened our relationship, which greatly troubled me. Becoming more and more distraught as my departure day approached, I decided my medications were no longer working. Without consulting anyone, I stopped taking my neuroleptic and soon became suicidal.
On Doctor Levy’s advice, who I telephoned at his home in the middle of the night, I checked into the psych ward at The University of Washington Hospital. The staff psychiatrist immediately placed me on medications and, with some signs of improvement, discharged me two weeks later. Shortly after my release, my love abandoned me “because I had changed,” which was most certainly true.
Brokenhearted and alone, I left for the University of North Carolina at Chapel Hill, leaving my lost love and new medications behind. As a consequence of non-compliance, I experienced a dramatic relapse of my schizophrenia that once again rendered me dysfunctional. Forced to relinquish my fellowship and dreams for the future, I drove across the country to consult Dr. Levy.
Example #2 - Near death, in 1969 I was admitted to the emergency room with a ruptured colon and a massive internal infection. I was rushed into surgery where a temporary colonoscopy was performed that saved my life. For ten days thereafter I was not permitted to consume anything by mouth, not even water. My neuroleptic was discontinued because it was only available in tablet form.
By the seventh day of hospitalization my paranoia raged and my insight evaporated. I became convinced one of the nurses on the night shift was trying to kill me and reported this to my surgeon.
Some of My Conclusions
Given the examples above, as well as other events related to my illness but too numerous to detail in this blog, I have come to the following conclusions:
1) I must take medications as prescribed if I am to remain functional. Without these, remaining in recovery is simply not possible for me, an acceptable quality of life unattainable.
2) Although I am dependent on my medications for mental and emotional stability and functionality, I am not addicted to them, very much like a person with Type 1 diabetes is dependent upon, but not addicted to, insulin.
3) It is my belief that throughout the many years Dr. Levy and I searched for medications that would bring my positive symptoms of schizophrenia under control, the medications I did take during this period, while not perfect, prevented the permanent deterioration of my capacity for functionality that might otherwise have been expected.
4) The medications I now take have enabled me to participate fully in our society, resulting in a productive and fulfilling life. (Read my Bio for details). I have been married to the same lovely woman for thirty eight years. We have one daughter with whom we are most pleased.
5) Fifty years into recovery and with the clarity of hindsight made possible by my medications, I firmly believe the uncomfortable side effects of these medications pale in comparison with the benefits provided by the coupling of effective medications with complete compliance, augmented with appropriate therapy.
The reader must understand that the conclusions cited above are my conclusions alone, based on my experience alone. These may or may not reflect the experiences of others and may not be indicative of what others might conclude on the basis of their own experience.
Share your experience in the schizophrenia forums.
Published On: December 18, 2006