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Program for Recovery and Community Health
School of Medicine
New Haven, Connecticut
Katherine Ponte, JD, MBA, CPRP, has no relevant financial relationships to disclose.
I have been living with severe bipolar I disorder with psychosis for more than 20 years. It took me many years to reach a point of stability. From that point in 2014, I began working to increase my sense of self-empowerment over how my condition affected my life. In 2016, I took ownership of my illness and reached remission. In 2018, I reached recovery.
Here are a few key moments on my journey and what I learned.
I was initially diagnosed with major depressive disorder during my first year of graduate school. Approximately a year later, I was in the midst of several stressful life events and experienced my first manic episode. When I was seen at the school’s psychological and counseling office, the psychiatrist diagnosed me with bipolar disorder within 5 minutes—not taking the time to offer comfort, validate my emotional distress, or even explain to me what bipolar disorder was. I knew little about mental illness at the time, and what I did know was consumed by stigma. It would have been helpful if the psychiatrist had acknowledged my shock, disbelief, and misconceptions about being diagnosed with bipolar. It would have been helpful if education had been provided about the prevalence of mental illness, that it can happen to anyone, and that it is possible to live a full and meaningful life with mental illness.
Instead, I was given a referral to a therapist and a prescription with no explanation of what it was or what to expect. This initial experience, along with stigma, led me to reject my diagnosis for 6 years, allowing my condition to worsen, until I was hospitalized.
At that first hospitalization, I was diagnosed again and I could no longer deny how serious my situation was; I reluctantly accepted my diagnosis of bipolar I. However, even still, my diagnosis was not clearly explained to me, nor was I aware that I could still live a full, meaningful life as someone with a mental illness.
One particular message about diagnosis that I want to convey to healthcare professionals is that kindness and compassion are critical. Healthcare professionals should meet the patient “where they’re at” as they may have no frame of reference for what is happening. They’re probably scared and confused. And as a healthcare professional and (likely) the first point of contact regarding the diagnosis, it’s important to take time to answer questions and let them know you’re their ally. Instructive, caring, and empathetic communication about a diagnosis is critical to acceptance of a diagnosis and treatment.
Self-Empowerment Through Peer Support
Patients who have overcome adversity can offer hope to peers who are struggling. Hope is vital to recovery—you cannot have recovery without it. It comes from within and from others; it can be inspired. My hope for recovery was inspired by a peer living in recovery with schizophrenia. She had her own company, was married, and seemed happy. The only examples of people with mental illness I had seen before this were discouraging—stereotypes of people with serious social issues and locked in the criminal justice system. This leads people to believe that recovery is not possible for us. We need to see examples of recovery to believe that it can be a reality for us. After I saw that recovery example, I immersed myself in the peer specialist community where I met many others also living with mental illness. It made me feel less alone than I had throughout most of my illness. I learned as much as I could about mental illness, and as I did, I grew more confident and determined to have a say in my care.
One of the first things I did to take charge of my life and illness was confront my (then) psychiatrist, who I had always found to be discouraging and disempowering. I told her that I could no longer live a life on a medication regimen that kept me asleep for 14 hours a day. It was the first time I had stood up for myself and my care in 5 years, and I don’t think I would have done so without the example of my peers and greater mental health education.
My message to patients and healthcare professionals is that there is a community of like-minded peers who can be an incredible source of inspiration and hope, helping to improve treatment outcomes. Whether it be an online community—such as ForLikeMinds or National Alliance on Mental Illness (NAMI) Peer-to-Peer programming—an in-person Clubhouse, or reading a book about the lived experience of other people living with mental illness, patients should be encouraged to find and engage with peers. I was even inspired to write a book about my lived experience to help others, ForLikeMinds: Mental Illness Recovery Insights.
I was angry at the discouraging treatment I received from previous doctors. Sixteen years into my diagnosis, I began seeing my current (and wonderful) psychiatrist who practices recovery-oriented care, which ultimately led to my recovery. Recovery-oriented care was relatively simple. Instead of merely achieving symptom control, it started with me identifying my life goals and working to achieve those. I wanted to have meaningful work, better relationships, and happiness. Instead of discouraging me, my psychiatrist said, “Why not?” I then told him what my specific treatment goals were: I wanted to sleep less, lose 50 pounds, and be more functional during the day. Again, he said, “Why not?” He then approached his whiteboard and expertly mapped out 3 medication regimen options, carefully explaining each one and answering my questions. He gave me his recommendation and then asked me for my preference. Given his careful explanation and obvious expertise, I accepted his recommendation.
The outcomes were nearly immediate. Within 48 hours my sleep had dropped from 14 to 10 hours a day. Within a year, I lost more than 50 pounds. Within 2 years of starting this new regimen, I also reached recovery, which I define as living a full and meaningful life. I created an online peer support community, I joined the board of a leading mental health nonprofit company, and I began to write monthly posts for a leading mental health blog. I have continued to remain highly engaged in these activities. Although I have had brief periods of depression and hypomania throughout this, these periods are more easily treated than my previous experiences. I have not had a prolonged period of depression or a manic episode since reaching recovery.
I am now highly engaged in my care, which is something my psychiatrist greatly encourages and supports with an educational environment. I believe most people living with mental illness want to have a say in their care, but they are often made to feel that they cannot contribute and grow tired of not being heard.
My message to healthcare professionals and patients is that recovery-oriented care can be a tremendous motivator to accept and adhere to treatment. Although a diagnosis should always be realistic, it should also be hopeful. In fact, up to 65% of people with serious mental illness will reach partial to full recovery, but this needs to be nurtured—a person’s diagnosis should begin a dialog about recovery, not dismiss it. I’ve found that psychiatrists typically take charge to treat patients for symptom management and to reach stability or remission, but from my lived experiences, better outcomes are attained by using shared decision-making and treating patients with the goal of achieving recovery.
My journey from diagnosis to self-empowerment and ultimate recovery took nearly 20 years. It did not have to take so long. More people—both patients and healthcare professionals—should know that having a mental illness is a journey that can lead to a fulfilling, recovered life. I hope that this awareness can help others feel empowered in a life of recovery more easily and quickly than I did. We should all be taught, supported, and treated to reach recovery.
In your clinical practice, how do you support patients being diagnosed with bipolar disorder? Join the discussion by posting a comment.