When I was diagnosed with schizophrenia, I didn’t believe the diagnosis was accurate. How could I ever have schizophrenia? I had college scholarships and thought I was strong. At the time, I thought strength was a cure for schizophrenia, and people with it needed to pull themselves out of their dysfunction and move on.
Today, I understand that my lack of insight was not just me, and that refusing badly needed medication is common in schizophrenia. Some 30 percent of people coming out of a hospital with a new diagnosis of schizophrenia do not even fill their prescriptions. Another 15-20 percent fall off therapy in the first 30 days of treatment, and 66 percent fall off therapy by month 12 of treatment (1).
A third never fill their prescription
There are many reasons why people diagnosed with schizophrenia never take their meds after being released from a hospital. I think the most prevalent one is a strong belief that they don’t need it.
When I was first hospitalized, I was not told my diagnosis. I remember going to a required class at the hospital where they tried to educate us about medications. However, I noticed the class was taught at an elementary school level which offended me, and I was also so adamant that I did not need medication that I did not listen.
Upon my discharge, no one sat down with me and explained that I had schizophrenia and that the hospital doctors and staff had seen a positive and noticeable shift in my behavior while in the hospital due to effective medication. Instead, my parents and I were given a script for medication, and told me to follow up with another psychiatrist. I remember a staff member at the hospital telling me I would probably be on that medication for the rest of my life, which disgusted me. I was sure she was wrong, and I was partly right—most people try several medications before finding one that works best for them.
Additionally, I was not unaware of the massive public stigma of schizophrenia, and the negative and accusing narrative in the media characterizing people with schizophrenia as bizarre, erotic, and dangerous. I thought medications for psychosis were sedatives that knocked people out.
I believed I did not need medication, and I secretly discontinued it after about two weeks.
15-20 percent fall off therapy in the first 30 days of treatment
Obtaining a diagnosis and medication is the first big step in the right direction. However, once a person with schizophrenia begins medication, a whole new set of challenges arise. First of all, patients may refuse or forget to take their medication.
When I was diagnosed, no one explained to me that discontinuing the med or even missing it every few days, was dangerous. Antipsychotics are not like other medications that can be taken for two weeks, discontinued, and then resumed in the future if needed with full effectiveness. If an antipsychotic is taken irregularly or discontinued, it can become less effective or ineffective, leading to disability.
But even for people who faithfully take medication, another hurdle is side effects. Personally, the first medication (that I believed I did not need) caused muscle rigidity, extreme restlessness, an uncontrollable appetite, sedation, and the need to sleep at least 16 hours a night.
Looking back, I wish one of my doctors had told me what to expect regarding side effects. Today the side effects I experience on my current medication (which I found a year after my diagnosis) are managed with two additional medications.
Two-thirds fall off therapy by month 12 of treatment
Obstacles occur, even for those who manage to stay on their medication for months at a time. For many, transportation prevents them from regularly picking up their meds easily. I remember my parents helping me get my medication refills, as it would have been difficult for me to obtain medication without them. I didn’t drive or own a car and I lived in a community without public transportation. And of course, once you get to the pharmacy, you wonder if anyone you know will see you picking up a medication.
In the long term, lack of insight and side effects continue to be major factors in the habitual discontinuation of antipsychotic medications. I found I could live with side effects for some time, but if side effects are not dealt with by working with a doctor and after a reasonable amount of time, patients will eventually come to believe that their fight to continue taking the pills is futile.
For me, after spending a year taking partially effective antipsychotics with severe side effects, I was ready to give up and be done. Fortunately, my parents convinced me to keep fighting. I consented day after day to swallow the pills, fully aware of the devastating side effects until a fully effective medication could be found to regain a quiet mind.
What worked
Education and perseverance toward recovery from schizophrenia were foundational to success. I read articles and books about schizophrenia as a physical and treatable condition. My goal was to return to college to finish my bachelor’s degree. It took 11 months on five different antipsychotics up to two at a time before a new doctor put me on clozapine, bringing me to full recovery.
The rest is history. In 2011, I finished college magna cum laude. In 2014, I published my memoir. Today, I am working, living independently, enjoying a wonderful circle of friends, and thriving despite schizophrenia.
We have a long way to go in convincing people with schizophrenia to consent to meds at all, and keeping them on the medication long-term is even more challenging. But we must fully understand the obstacles and hurdles along the way, making every effort to enable people with schizophrenia to accept treatment that can make their lives fulfilling and successful.