By Katherine Ponte, JD, MBA, CPRP
After I received my diagnosis, I did not want to take my psychiatric medications. I thought the illness was just a phase and would pass. I doubted that a pill could address my erratic behavior or take away my pain and suffering. I did try anyway, but I struggled for 10 years to find the right medication. The process was incredibly frustrating and discouraging.
Eventually, I found a wonderful doctor. He showed me that medication could help me live the life I wanted, even with bipolar. Together, we found the best medication regimen for me, and I was able to get on the path to recovery. My mother recently sent a card to my doctor with a message: “Thank you for giving us our Kathy back.”
Through this process, I learned a lot about medication. I would like to share some of this information, so other mothers, like mine, can feel that their children are getting the best possible care.
A primary care doctor, psychiatrist, or psychiatric nurse practitioner may prescribe medication. A psychopharmacologist, which is a psychiatrist with expertise in medication management and more experience treating serious mental illness, can also prescribe medication.
Finding a good psychiatrist, or any other mental health provider, requires careful research. The most important factor to consider is if they fit what you are looking for, which can be critical to good outcomes.
It’s advisable to carefully question your health care provider about medications so that you know what to expect, including activity and lifestyle restrictions and possible interactions with other medications. The most common questions are: What are my options? How long will it take to be effective? What are the possible side effects? What if it doesn’t work? No question is too small, and doctors should encourage their patients to ask them.
Treatment should be person-centered and individualized. It can help to use a shared decision-making approach (SDM). Under SDM, a doctor will provide recommendations based on their expertise and ask the patient for their preference. It can be a very empowering approach and increase adherence. Treatment should offer hope by focusing on the pursuit of life goals rather than merely treating symptoms and avoiding risks.
Person-centered care and shared decision-making made me willing to try an entirely new medication regimen. I found a new psychiatrist who better fit my goals, which bolstered my confidence and my commitment to treatment.
Nonadherence to medication is common. More than 60% of people with serious mental illness do not take their psychiatric medication as prescribed. Partial or complete nonadherence to psychiatric medications is associated with many adverse outcomes, including “exacerbation and relapse of symptoms, impaired functioning, suicidal behavior, increased hospitalizations and emergency room use and increased health care costs.”
Those who agree to try medication may become nonadherent for many reasons, but adverse side effects are usually the primary reason. This happened to me. One medication caused me to gain 60 pounds in two months and another had me sleeping 14 hours a day. In both cases, trying to get off these medications led to an episode and hospitalization. I also once stopped taking medication because I believed I was “cured” when I started feeling better.
I also feared medication shaming, which is not uncommon for psychotropic medication. In fact, it is so prevalent that one of SNL’s cast members, Pete Davidson, who lives with borderline personality disorder addressed it on a show segm ent stating: “There’s no shame in the medicine game. I’m on ’em. It’s great."
Family and friends may also negatively affect a person’s decision to take medication if they tell the person that they do not need medication. It’s no surprise that the greater the difference between consumer and caregiver attitudes towards taking medication, the greater the risk of nonadherence.
There are many ways to encourage adherence. In my case, it was critical for me believe that medication could help me achieve my life goals. Stability was not enough for me. I wanted recovery, my doctor and family to be responsive to my concerns, and side effects to be minimal. A few other methods are:
Community health workers and peer support
Electronic medication measurement
Pharmacy-based reminders, such as those that send notifications to health care providers when a patient does not refill a prescription on time
Ultimately, taking medication requires weighing the pros and cons with a doctor. But once you have committed to trying medication, adhering to your doctor’s prescription is key — even if people, including loved ones, tell you that you don’t need it.
An integrated treatment approach that addresses medical, psychiatric and social aspects can be highly beneficial. Research shows that medication with therapy is the most effective approach. The examples of others living well with mental illness on medication can also be incredibly powerful.
A caregiver can be a helpful part of the treatment plan. Their input and observations about the loved one’s condition and progress can be valuable to the doctor. This approach often includes a collaborative care plan.
An integrated approach can be helpful for people living with a co-occurring disorder (mental illness and substance use) or co-morbidity (a mental illness and physical condition). Additional treatment providers may be required to effectively address all conditions. Inadequately addressing one condition may make it difficult to address the other condition(s).
Medications may not work quickly, and many people give up too soon. Often, finding the right medication is an exercise of trial and error by the doctor to achieve a regimen that is most effective while minimizing adverse effects. This process can be long and discouraging.
I understand how that feels. I’ve been there. I don’t like taking medications, or that my medications serve as a daily reminder — day and night — that I have mental illness. But I need them to survive. I owe it to myself and my loved ones to take good care of myself. And you do too.
We may experience many setbacks, disappointments and mistakes along the way to find our best medication regimen, but we can’t give up. We must view every trial and error as a learning experience to bring us closer and closer to recovery.
Katherine Ponte is a mental health advocate, writer and entrepreneur. She is the founder of ForLikeMinds, the first online peer-based support community dedicated to people living with or supporting someone with mental illness, and Bipolar Thriving, a recovery coaching service for caregivers and their loved ones affected by bipolar disorder. She is also the creator of the Psych Ward Greeting Cards program in which she personally shares her recovery experiences and distributes donated greeting cards to patients in psychiatric units. She is in recovery from severe bipolar I disorder with psychosis. She is also on the board of NAMI New York City.
Author’s Note: I owe you, my amazing doctor, the world's greatest psychopharmacologist Dr. Joseph Goldberg (and your magic whiteboard) a huge debt of gratitude. Within the first fifteen minutes of our very first visit, you came up with the best medication regimen for me, which has been only minimally adjusted in the four years since I started treatment with you. Nearly instantly you gave me back my life. I wish everyone had a doctor just like you. Your treatment, my conviction and my family's support have allowed me to live a life of helping others affected by mental illness. I am now motivated by the hope that my lessons learned might help them reach recovery more quickly and easily than I did and, in so doing, my example might lessen their pain and suffering. For this gift, I share my deep heartfelt thanks with you.
For those interested in learning more about my relationship with Dr. Goldberg, please read my paper for the American Psychiatric Association's Psychiatric Services Journal – A Risk Too Big Not to Take: A Story of Recovery.
We’re always accepting submissions to the NAMI Blog! We feature the latest research, stories of recovery, ways to end stigma and strategies for living well with mental illness. Most importantly: We feature your voices.
Check out our Submission Guidelines for more information.
Find Your Local NAMI