The Stages of My Mental Illness

I was conditioned to view my illness on a scale of “severe” to “less severe.” I was accustomed to doctors describing my condition based on how I was doing at that moment rather than where I was on my mental health journey. This approach echoes exactly what’s wrong with the way we approach mental illness—as a permanent state rather than a path towards living well. In fact, I wasn’t even told about the prospect of recovery.

When I started feeling better, I realized that mental illness is a process. And I believe that approaching mental illness as a process and a journey to recovery can foster hope and improve treatment outcomes. It can also help loved ones understand and participate in the recovery experience.

The following are the steps I took on my mental illness journey, along with what helped me or what would have helped me. I hope they help someone else chart their own path to recovery.

Symptom Onset and Diagnosis

At the time of my symptom onset and diagnosis, I was experiencing intense academic pressure, career uncertainties, family illness and trauma from a sexual assault. I was convinced that these experiences were the cause of my distress and I wish someone had validated these emotions. I managed to see a psychiatrist, but they seemed more interested in putting a label on me than seeing me as a whole person.

• A more empathetic, compassionate and informative initial doctor visit would have definitely helped. The first visit is critical—it strongly influences diagnosis acceptance and follow-up care. I also wish I had brought friends or family to support me. Without these things, I dismissed my diagnosis and it went untreated for many years.

Crisis

Ultimately, I had a crisis—a full manic episode. I was forcibly taken from my home under police escort and was hospitalized. I was angry at my spouse for making that 911-call. But afterwards, we were both relieved it was seemingly over. No one discussed the likelihood of a relapse. So we were both unprepared when my spouse had to call 911 again in the coming years.

• I wish my psychiatrist had carefully and realistically discussed the possibility of relapse and what we should do in a crisis situation. Only after my third hospitalization did my spouse and I talk about the potential for future episodes. Discussing it at a time of calm and stability allowed us to develop a crisis plan without pressure and with clarity of mind. Having a plan has provided both of us with some sense of ownership in the treatment process.

Withdrawal and Isolation

I withdrew and isolated after my diagnosis and hospitalizations. I didn’t want to talk about them, didn’t know how to talk about them, and I didn’t want to be a burden on my loved ones. This was very difficult for my mom. She would call me, but I refused to speak or said very little.

• My mom learned how to communicate with me when I was isolating. She stopped asking me how I was doing; instead she would text me “I hope you’re okay,” which was better. She also started sending me small, loving gifts. The gifts really meant a lot to me when I was very ill. In fact, they were the inspiration for RecoveryBoosters, my gift shop for people with depression. Eventually, my mom expressed that the single most important thing to her was to receive a nightly text telling her I had taken my medications—so I still do that to this day.

Treatment

My spouse did everything he could to get me the right treatment. When I was unhappy with my first psychiatrist, he found me another one. Initially, I was hopeful and optimistic with the change, but my spouse and doctor started communicating directly and making treatment decisions for me. I felt completely disempowered and excluded from my own care.

• When I moved on to my third psychiatrist, I took full ownership and control of my treatment, and the outcomes were far better. My spouse saw me improve and learned to respect my need to control my own care. I didn’t want to exclude him; I just wanted to be directly involved too. We reached an agreement on when and how he can contact my doctor. We even developed a Collaborative Care Plan for interactions between clinicians, family and consumers.

Stability and Recovery

For many years, I struggled to reach and stay in stability. I think I struggled as much as I did because I wasn’t satisfied with stability being my end-goal. My treatment seemed solely focused on not being combative, in a crisis, hypomanic or manic. The cost of this was not living fully. Stability meant surviving, but not thriving. This was not the life I wanted to live. I needed so much more.

Recovery is about experiencing. It’s about pursuing. It’s about thriving. It’s about living fully. Recovery is about managing risks, the risks we all need to take to achieve our best selves. After I learned of revovery, I was filled with uncontrollable anticipation, but I realized that I needed stability to pursue it. I needed stability as a transition not an end-goal. Recovery could be on the other side.

Stability and recovery would not have been possible without the love and support of my spouse. He enabled the most important part of my recovery—the ability to dream and pursue my dreams.

• I knew I had reached recovery when I felt ready to fulfill my dream of helping others by creating ForLikeMinds. For over 15 years, I was afraid to dream because I was convinced that I would be disappointed. But my doctors, spouse and I are working together to maintain my health.

My journey from that first diagnosis to recovery has been long and hard, full of pain and suffering for me and my loved ones. That journey is never-ending—there is no cure for bipolar. But now, my family’s support helps guide the way along familiar roads I’ve traveled before. They make these journeys less uncertain, more manageable, more endurable because I know this is the way to continued recovery.

Author’s note: Thank you, Izzy Gonçalves, my spouse for sticking by me though each and every stage, for all of your love and support. I could not have reached recovery without you. 

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. 

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