It’s been a year since I went public with my mental health diagnosis. The most frequent question I get is, “How do you stay on your medication?” If only there were a magic bullet. Medication compliance is a nuanced and complicated issue.
In 1998, I began to resist psychiatric treatment. I held out for over a decade. For twelve years, I had a difficult relationship with my prescribed psychiatric medication. Over and over again, I would go off my medication. I faced the consequences of not treating my bipolar 1 diagnosis with mood stabilizers and antipsychotics head-on. Life was a chaotic rollercoaster. Eventually, something changed. This is how I went from medication resistance to medication compliance.
"This is how I went from medication resistance to medication compliance."
The only way I can accurately write about med compliance is to tell my story. I have identified four core reasons why I used to reject medication in the past. I refer to these as “The Four S’s of Medication Noncompliance”: skepticism, symptoms, shame, and stigma.
Scepticism
At the time of diagnosis, I was young and skeptical. I harbored immense distrust toward pharmaceutical companies, and I used that as a reason not to take my medication. Unfortunately, when I spoke against pharmaceutical companies, there was a kernel of truth. Pharmaceutical companies aren’t 100% ethical and are widely criticized by the public. However, my critique was misguided. My skepticism wasn’t healthy because it attempted to justify my noncompliance. The amount of energy that I expended pleading my case against pharmaceutical companies presented as unhealthy behavior. At the time, I didn’t agree with the directives of medical professionals, but in retrospect, I now do.
Here is what changed for me. Bipolar disorder is debilitating when untreated. My skeptical behavior brought me to my knees multiple times. I had no choice but to seek psychiatric help. Once desperate enough, I realized that my course of medication stabilized me. Unfortunately, many of my ‘treatment peers’ never reached a point of long-term medication compliance. I am one of the fortunate success stories. After being on medication for five years straight, my outpatient psychiatrist transferred my file to my family doctor. The day that he handed over my care, he admitted to me that sustained medication compliance is something he rarely encounters.
Symptoms
Mood stabilizers and antipsychotics treat a variety of symptoms of bipolar disorder. Unfortunately, these psychiatric symptoms work against the long-term usage of the medication. Mania, paranoia, and depression are all symptoms that undermine effective mental health care. I am grateful that I have not experienced mania since 2009. Mania is such a grandiose experience that I often pushed my medication aside and embraced the temporary productivity of an elevated mood. Long ago, when I had paranoid delusions, I never trusted authority. Medication prescribed by a doctor was a representation of authority, so when delusional, I rejected the use of medication. Depression is an inevitable symptom of bipolar disorder. In fact, some people take medication for bipolar and still feel depressed. A depressive episode could lead to going off your medication because you don’t think the treatment is working. Mania, paranoia, and depression were all symptoms that occurred over the two years it took to reach a stable and manageable state while establishing a medication routine. In the years prior to my present success, I was never able to stay on medications for longer than a year.
Patience is a key component in dealing with the symptoms of a mental health condition. Everyone, from medical professionals to loved ones to the diagnosed individual, requires immense patience. For twelve years, I had to try over and over again to find sustained wellness. My parents grew frustrated, but they never gave up. Other family members endured multiple crises, but they always remained supportive. Watching me go in and out of the hospital was frustrating for everyone. Ultimately, patience was one piece of the puzzle that led to medication compliance.
Shame
When I began to take medication, my mind always slowed down. As the delusions, mania, and paranoia receded, I was left with shame. I started to remember things that happened during my manic episodes, haunted by the shameful actions of my past. During meetings with my psychiatrist, I mentioned all the things that I was ashamed of, but it appeared to fall on deaf ears. It took me a long time to realize that acute psychiatry is not the place for psychotherapy and counseling. Psychiatrists in hospital and transitional outpatient settings were there to treat my mental health on a purely physiological level. To me, psychiatrists seemed to be in a rush and didn’t appear to care about my feelings. After many relapses, I discovered that they did care about my feelings, but their focus was on treating my brain, not my emotions.
Shame was finally addressed when I embraced my psychiatrist’s referrals. I often ignored pamphlets for support groups or suggestions for group therapy. I was too preoccupied complaining that my psychiatrist wasn’t listening to my emotional problems to realize that they were referring me to counselors and support groups that could address my additional issues. Once I received comprehensive support (therapy, psychiatry, peer support, group therapy, exercise, good nutrition), I began to understand shame and live well with bipolar disorder.
Stigma
My medications take up a lot of physical space. I have four large pill bottles in my medicine drawer. If I tote my meds around with me, you would most certainly be able to hear them shake around in my backpack. When I walk onto a plane, the sound of the pills shaking in the container in my carry-on still embarrasses me. The distinct click of the pill bottle lid in the bathroom before bed always brought the stigma to mind whenever I stayed overnight at a friend’s house.
I was diagnosed as a young adult. I wanted to be free. I wanted to travel, go out on the town, and go with the flow. How was I supposed to do that while carting around all of my pills with me? I couldn’t openly admit that I needed drugs to function as an adult! For years, I struggled with the concept of being burdened by the stigma of the medications that were supposed to help me. This drove me to stop taking my medication on numerous occasions between the years of 1998 and 2010.
It took many years for me to be at peace with the stigma of psychiatric medications, which have such frightening names as ‘antipsychotics,’ ‘mood stabilizers,’ and ‘anticonvulsants.’ The stigma still exists, but I am now more comfortable with the societal perceptions tied to psychiatric medications. If someone were to inquire about my medications, I would readily explain my daily regimen. Fifteen years ago, I would have struggled with such a conversation. Not every person I encounter will understand the value of my psychiatric medications. Fortunately, if the stigma I carry surfaces, I have the support of peers, my therapist, my doctor, my spouse, my faith community, and my family.
"I lament for the people with mental health conditions who could benefit from psychiatric medication but resist for some reason."
The best way I can end this article is with a lament. I lament for the people with mental health conditions who could benefit from psychiatric medication but resist for some reason. My heart is deeply concerned for people who find success but some aspect of their mental health condition draws them away from a routine of drug therapy. In my experience, the hardest part of treating a serious mental health condition is the medicinal component. I have found that mental health treatment is elusive, tricky, complicated, and baffling. It is sad how challenging finding success can be. The alternative, medication noncompliance, is dangerous, painful, and in some cases, due to the high risk of self-harm, fatal. Considering all of the aforementioned trappings and dangers of medication resistance, I implore psychiatric patients to give their medications a chance to work. Additionally, I encourage their families and loved ones to never lose hope.
All the best,
Pastor Seth Perry
10 Responses
Medications…not an easy road. Another part I am frighten by when praying about recovery for my loved one. All the S’s make sense.
Thank you Pastor Seth for being a strong and passionate voice for mental health.
Thank you for your comment Nancy. I appreciate your input.
Thank you Seth for sharing your experience, strength and hope. This is an important topic and people need to know it’s ok to talk about it. I appreciate ya!
Thanks Brandon! I appreciate your support.
You say you have the support of your faith community. That is certainly true here and we support you in any way that we can. Blessing to you for your ministry both for Christ and for the mental health community.
Thanks Alan. The support of my faith community is massive! Thank you!
Pastor Seth. Thank you for your honest and heartfelt journey thru your own story. There are so many moving pieces in each person’s journey. As family members read your story we can appreciate the helpful need of continuous support thru this.
Public awareness can help to eleviate how individuals feel about themselves in a negative way. Talking, sharing stories and providing ways for all to find help and compassion . Elim is grateful and may our church family continue to nurture and love all seeking help.
Thank you so much for taking the time to read and make a comment.
I am glad that there are so many people interested in improving public awareness locally. It has been really important to see other folks get nurtured over this past year. Here’s to more learning and growth.
This article helped me so much I wrote down the most important aspects about it in my personal diary. It is so true, how scary the names of medications for bipolar are, how afraid you are that they will change who you are, your personality, the spark that defines you. But since being on medication now for a year, I feel my truest self coming back. I feel the person I was with or without medication gently coming back to me but this time, I am protected by medication to keep me as I am without complications. Thank you so much for this article, it truly helped someone living with bipolar I.
Yasmina,
Thank you! I appreciate your willingness to share your journey. Trusting myself was a key in building my foundation of care.