Medication Adherence and my Schizoaffective Journey
by Sarah Myers
Listen to Executive Director Gabriel Nathan read this post aloud:
My father will tell you that getting me to keep taking my medications was one of the most consistent struggles we dealt with from ages 15 to 23.
At 15, I would say, “I’m all better!”
At 16, I would say, “I want to go all natural!”
At 17, I finally gave in. I went on real medications: a mood stabilizer, an antipsychotic, and an antidepressant.
Then at age 22, I turned around. After my boyfriend said, “You don’t need all of these! Why are you even on them?” I replied that I had no idea. All of a sudden, I began reporting to my doctor that I had been experiencing locked jaw and twitching muscles for years, symptoms that went largely ignored until my boyfriend told me they could be problematic.
So I went off of them. All of them.
I then entered a manic-depressive psychotic period with extravagant spending habits, socially inappropriate behavior, and romantic relationships with movie-like plots. I spent time in strip clubs with dancers and their patrons, befriending both as a hobby on my weekend nights before I went back on my medications at 23.
I was newly diagnosed with schizoaffective disorder and, this time, I worked with my doctor to make sure I did not exhibit tardive dyskinesia or extrapyramidal symptoms. Schizoaffective disorder is essentially schizophrenia and bipolar disorder put into one diagnosis. I have psychotic symptoms, including hallucinations, delusions, distorted thinking, and paranoia. I also have depressive and manic episodes where I cry uncontrollably, or I have so much energy I feel like I could make a rocket ship and fly to the moon in one night. (My latest ambition is to build a time machine or fifth dimension holding space like in Interstellar, so I can communicate with my past self.) I have struggled with this disorder at its full effect since I was 16, still in high school, but the symptoms have been creeping up on me since I was a young child. All the while, I have tried to go off of medications several more times. I reasoned with myself that therapy was resetting my brain so that, at some point, I would be considered neurotypical without the chemicals; and that the medications were having an opposite effect: they were exacerbating symptoms they were designed to treat.
Of all the complexities that go with mental illness, chemical treatment remains one of the most despicable enemies of the modern sufferer. When we have lost all our mental faculties, our trust in our brains, our grounding to reality, and the self is the thing we seek to protect the most.
Quitting medications without first consulting a doctor is what National Public Radio (NPR) refers to as medication non-adherence. A 2017 meta-analysis of 36 articles found that people stop complying with their prescriptions because of poor side effects, negative attitudes about medications, drug and alcohol abuse, and poor relationships with mental health providers.
A particularly common factor in those with schizophrenia who stop taking their medications is anosognosia, or an incapacity to acknowledge being sick.
Any esteemed memoirist in the mental health genre is likely to have a similar tale: the diagnosis is made, medications are introduced (with hesitancy), and then begins a long and arduous process in realizing that we need these pills in order to survive. Somehow, the human brain cannot understand itself to be at the mercy of a few chemical compounds. We reject the therapeutic notion of this forensic-like machinery. Kay Redfield Jamison in An Unquiet Mind revolves around several years of cycles before she finally accepts her fate as a manic depressive. Elyn Saks in The Center Cannot Hold goes through several bouts of rejecting medications for her schizophrenia before she trusts in the power of them in her efforts to embrace her own recovery path.
It does no good to be surrounded by naysayers of the mental health establishment. For example, my Vietnamese mother will tell me, “Drugs are bad for you. You should get off them.” The stigma in my mother’s rural Vietnam upbringing has largely affected her idea on mental illness. She never heard of mental illness when she was young, and to this day she denies my illness as a whole. It is impossible to bring up these concepts to this side of the family, and global reports reveals that there is a general shortage of mental health professionals outside of the West. This is the unfortunate attitude of many who see their family members go on medications all across the world. Surprisingly, in America, we are the leading promoters of medications, even when we read commenters on mental health blogs expressing dismay at the industry: “I was put on medications for years when we realized they didn’t work!” “Did you know that at least 30% of people are medication averse?” Such statistics are often uncited, as bold as the exclamatory emphasis by the authors themselves.
When I am on my medications, no one can tell that I have a disorder. I function and blend in with the other 99% of people (only 1% of people worldwide have schizophrenia). I can go to school full time, and work full time. The only thing that might tip someone off is that, when I have the time to do so, I sleep excessive hours due to the sedation of my antipsychotic medication. Even when I’m busy, I feel the heavy pull of my eyelids to squeeze in a few more minutes of snooze. But missing a single dose can throw me off center within a few hours. By the end of an un-medicated day, I’m seeing or hearing spirits and angels. I think that I am God. I sometimes feel euphoric about the universe while incongruously resentful of humanity.
Because of my positive response to medications, I am able to work. My career industry of choice happens to be in neuroscience, as a full-time lab technician, living with my disorder in a wary limbo of uncertainty of safe environments to disclose my illness. One day at work I started to notice uncontrollable sadness and simultaneous excessive energy. I quickly recognized it as a prelude to psychosis, symptoms of which include my perception that the world is tilting, and murmuring chatter begins in my head. I got worried. I got fearful. Who could I tell? Who could help me?
Not a very large percentage of people with schizophrenia are able to work, including part-time jobs such as fast food. An even smaller number of us are able to have careers, much less pursue graduate work or full-time employment in a complex scientific field. Why? Partly because many individuals lack a support system to help them do what they need to do to manage their disorder: eat healthy, sleep healthy, and intake a daily dosage of at least a few of neurochemicals to keep their symptoms at bay. In the work setting, the disorder is so stigmatized that many people with schizophrenia hide this disorder. In fact, when I shared that I had a hint of mental health issues, my boss subsequently talked me out of my job, then two weeks later found another reason to terminate me.
I was unfortunate to be met with hasty discrimination, and it is something people with schizophrenia often think about when they are at work. The stigma and ignorance surrounding acute psychotic episodes makes the world unprepared to integrate neurodivergent individuals, and we are left with a confusing mess of uncertain “safe spaces.”
On the contrary, I am very fortunate to be so high functioning. The popular writer, Esmé Weijun Wang, also has schizoaffective disorder, but she has a medication-resistant condition, so antipsychotics do not work on her. I have found a cocktail of medications that stabilize my mania and depression, and mostly reduce my psychosis with, at most, one side effect of being sleepy during the day. In the mental health world, especially for people with psychosis, this is nothing short of a miracle.
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I have found refuge in the opportunity to work in this field and advance it to make it better for people like me. I’m now enrolled in a Master’s program in behavioral neuroscience. My thesis project concerns the computational nature of mental illness, and my classes explore what it means to be mentally and behaviorally ill. However, it is frowned upon to cite your own experiences as a scientist in training, or even in application essays as your motivation for pursuing graduate-level work. This has created a culture of the unfortunate necessary decision to live a double life for people with mental health issues who work in academia, myself included. As a result, I have mostly chosen to keep my disorders to myself in a public setting, unless signs point to my environment being a safe space. By default, I pretend I have no real-world experience in discussions of schizophrenia, except with my closest support system, such as my academic mentors. However, if people are so inclined to look me up on the internet, they will find that I have written extensively on these topics.
The limitations of the disorder have created a stigma against a society that brands “schizophrenics” as hopeless people, too far gone to save, and pushes people living with serious and persistent mental illness to only share in certain “safe places.” And as a response to the “illness” perception, people have taken to rejecting mental illness as a whole. But this is an unsubstantiated gesture. At the beginning of my thesis, one of my mentors brought up the fact that mental illness is beginning to be studied in the context of biomarkers, in order to better diagnose and treat the disorders. Biomarkers are physical signs (genetic or cellular) that distinguish between neurodivergent and neurotypical brains. Mental illnesses, in this light, can be, and are, viewed as biological and molecular issues that arise within the context of our physical beings.
Living with a psychotic diagnosis has only increased the immediate sense of shame and failure. Yet concurrently, living in the psychotic reality feels like a special gift in some ways.
These delusions feel like truths that have chosen you and are speaking to you.
You have superpowers, but they abuse you and take advantage of you.
You have achieved a level of accomplishment that was seemingly unattainable.
You have insight into the future.
You can communicate with aliens.
To accept that these symptoms are a product of illness or malfunction rather than gifts, we run the risk of complete and utter failure of our own biological symptoms. We cannot accept that we would be so foolish as to fall for these illusions. While a neurotypical person might be aghast and run away from the first signs and symptoms of psychosis, the disordered person has no immunity to this psychotic state. The disordered person is susceptible to falling for tricks of the brain, while the neurotypical person has a robust defense system to work against its tricks.
Society is of dismal capacity to help once the disorder kicks in. There is a cultural issue of holding onto the sickness in the form of the “interesting” sick person, or the distressed genius, an archetype we do so much to uphold. We think of geniuses throughout history who performed some great human act that society would have deemed impossible if not for mental illness. “Who would write the books and dark comedy if it were not for mentally ill people and their traumatic childhoods?” was the question posed by Teresa Strasser on a podcast called “Mental Illness Happy Hour.”
Her guest, Paul Gilmartin, went on to praise mental illness as if it were a gift. He is not alone in this culture in suggesting that this curse is actually disguised as a “blessing.” Psychosis and bipolar disorder are often referred to as the genius’s disorder: where would we have our scientists and literary writers if it were not for Virginia Woolf’s depression and child molestation, or the mathematician John Nash’s schizophrenia? Facebook posts attempt to be inspiring by comparing mental illnesses to positive traits. Depression? It’s really “compassion”! Anxiety? That’s really “patience!”
When I was 16 and just beginning intensive therapy, I told my therapist I was afraid to change my depression, for I was afraid I would lose my creativity, and lose who I was. I clung to an idea of myself as a person with depression as an identity that I didn’t want to let go. My therapist told me many of her other clients worry about the same thing.
But this notion has no basis in reality. I haven’t lost my creativity as I’ve recovered. The opposite has happened: as my mind becomes clearer, I gain more insight into what will appeal to an audience, and that allows me to create better content. The idea that some sort of “genius disorder” is the cause for “genius” must be abolished. There are masterworks in any genre, achievements in any field attained by individuals who have not dealt with forms of mental illness. Nobel Prizes will still be awarded to people without mental illnesses. There are great thinkers and scientists but they don’t get referenced in society precisely because they are not “interesting” to the public in that there is nothing wrong with them.
Genius sickness and the denial of the physicality disorders prevent us from letting go of mental illness, to transform into something healthy, vibrant, and new, that we as a species possibly have not yet known. Failing to give up the old archetypes prevents us from searching for more transformative cures for our mental suffering (as the common denial of mental illness will suggest).
However, contrary to the popular stigma, I’ve found medications to be personally integral to my recovery. I would not be the same without my antipsychotic and my antidepressant. I am confident, even proud, that my stability depends on my regular intake of these three little pills every day. Yet I have a lingering desire to be off of them, because of societal myths and stigmas associated with psychiatric medications.
Of course, I am not alone. There seems to be something about us as a society that is amnesiac, forgetting our weaknesses as biological creatures, organisms made up of chemical compounds and electrical signals, biological restraints that make up the various organs in our body, our sensitivity to time, circadian rhythms, clocks, our sense of direction, and orientation to the world around us. We are embedded in a world of mechanics, but we do not want to see ourselves as mechanical. We want to believe we are independent creatures, enlightened by our own rights, isolated from the limitations of our genetic makeup. This cognitive dissonance between us as truly enlightened creatures makes us unaware of how earthly we are—bound to the rules that constrain our human form. Some of those rules have yet to be discovered by future scientists.
I speak for the National Alliance on Mental Illness (NAMI), and one of the questions they ask me to answer is what recovery means to me. I have told hundreds of kids ages 14 and younger repeatedly that recovery does not mean getting rid of your illness or curing your disease. Rather, it is learning to live within your realistic limits and potential. We all have limits, I say. People with mental illness have different kinds of limits, but it does not mean we cannot accomplish our life goals. I try to emphasize that there is nothing wrong with being sick. Similarly, there is nothing wrong with one’s character when one is psychotic. It is just a word, and we control the connotations of those words over time and with incremental societal change.
I usually end my speech on a positive note, and am met with many blank stares from students who do not know the complex world of living with a mental illness. Johns Hopkins reports that mental illness usually kicks in around the late teens to the mid-twenties, but at NAMI we try to prepare kids by educating them earlier. Hopefully, in line with this grassroots mission, starting at any moment—as long as it is now—will take repetition to learn, but eventually evolve into something like a trait of our own mental habits. Ideally, in the form of a new mental identity, we should embrace diverse, evidence-based treatments and integrate our illnesses in a culture free from shame, and without attachment to stagnating, broken models of the self.