Is There Life After Diagnosis: Finding Myself after Learning I Have Bipolar
Listen to Executive Director Gabriel Nathan read this post aloud:
My friend was recently diagnosed with ADHD—and, for her, it was an explanation to traits and neurodivergent patterns she witnessed in herself for years. However, she does not let her diagnosis stop her. She has a thriving online business, outside interests and passions, and a host of good friends.
After being diagnosed with bipolar type 1, at age nineteen, I didn’t want to believe my new reality. I was diagnosed after my freshman year in college. My illness displayed itself with powerful creative insights and metaphors that only made sense to me. I confused and frightened my classmates and the faculty. I screamed poetry to the wind, to my own broken sky, while bystanders watched in confusion. I made inappropriate jokes to other students. And, when depressed, I became a loner spending time on my computer and when things got really bad, cutting with razor blades.
My days were spent racing from one activity to the next and in the evenings, I exercised and spent time writing, which kept me up all night. I planned an unrealistic future for myself, I had dreams of going to Harvard for graduate school when my test scores did not meet the expectations of being accepted to such a program. I landed in the hospital in full-blown mania after that tumultuous freshman year. Confused, scared, and alone I did not want to accept this new part of me. I wanted a “normal” life. I wasn’t sure how much of who I am I needed to share with others and who I should share it with, or if I should even share it at all.
When I came home the summer after my freshman year, I was hearing voices and talking noticeably fast. My moods bounced between grand elation and suicidal ideation, like the waves off the Atlantic on Nantucket. I ran away from home and thought I could live in a tree near my house. I don’t remember too much of what I did or said next; mania makes things blurry. I was frenzied and had false beliefs about who I was and what my abilities were. I do know I hurt the people around me as they were trying to help. My parents were frightened. They took me to the ER. By the time we reached the hospital I was screaming nonsense to the sky, racing around trying to escape, and telling everyone I was a doctor. I thought I could read medical books just by staring at them.
At the hospital, doctors stabilized me on medication. I felt dopey and uncoordinated. It made me fall and bump into things at first. It made me talk slowly. I didn’t know how I would go back to college. I spent eight days in the hospital. They said I needed to stay longer but my insurance would only cover a week. I liked one of the doctors there and she told me to read Kay Redfield Jamison, an author prolific on manic depression and creativity. I even played Scrabble with the nurses when I was more stable. As I became more stable, my body got used to the medication and I began to have a clearer outlook on life. I realized how I had hurt many people, but now I had a reason why. However, a reason why should never be an excuse.
But it was when I got discharged that reality sunk in. I now had a new label that I would have for the rest of my life. At first, I wanted to keep it a secret. But I’ve always oriented myself towards social justice and changing the minds of others. Also, rumors were spreading about my strange behavior during freshman year and the pills I now took. Once I saw the resistance to mental health and taking medication for mental illness on my campus, I decided that someday I needed to speak up about my experience. I just didn’t know how. One girl alluded to mental health issues while we were in the student lounge. “I’ve never known anyone to have a nervous breakdown,” she said. A psychotic break is hardly a nervous breakdown. Nervous breakdowns were for overworked businessmen and sad housewives. I had had an experience with unreality. The term didn’t fit me. Another girl asked me to keep it a secret that she took antidepressants in high school to deal with trauma. I realized that we needed to change the language around how we talked about mental health so people would see that mental health issues were something everyone dealt with, not just people with a mental illness. And, as a writer, I knew I had been called to do so.
Through the shocks of unpredictable mood swings, I gradually learned to accept my diagnosis. I incorporated the rituals my diagnosis brought into my life: meds, therapy, psychiatrist visits. But somewhere in this netherworld, it started to consume who I was. All I could talk about was bipolar and mental health. I started my blog about mental health because of it, but more so it felt like my diagnosis was the third person in every room with me. I felt stymied and stifled by such a limiting self-belief. I want to lead a “normal” life, but now I see a before and an after to what once felt normal. I had this story I needed to tell, yet I was afraid of other people’s judgment. I knew people needed to hear my story but I also knew they needed to just see me show up in the real world like one of them.
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I mean… I had other interests such as fitness, photography, cooking, and art. But eventually all the books I read were mental health memoirs and scientific journals on psychology and mental health. It was like I had an illegitimate degree in psychiatry. Now, I’ve always been in favor of becoming your own psychiatrist at least when it comes to understanding your doctors and the medications out there that can help you, but there is a point when the illness becomes who you are.
I have to remember that my diagnosis is an explanation not an identity, when understanding your illness does not mean being consumed by it, when a fascination turns into an obsession. All I could think about was how and when to reveal my truth. The books I read were all about mental health; my writing carried those themes as well. I felt confused and lost. The person I was before my diagnosis was gone. I was a walking automaton of psychology books. I didn’t want to be a stereotype or a mental health nut, someone who would club you over the head with positive mental health talk. I wanted my other self to come back, but I wanted to also embrace this new identity.
The problem with the mental health advocacy movement is that sharing lived experience tends to be the waking moment of a person’s very identity. I have to remember that I am a human before I am a diagnosis. I don’t have to spend every waking moment writing about mental health; I can write about other things too. The great scientist and writer Temple Grandin says that parents of children with autism should not fixate on the label because this holds them back from exploring and becoming all that they can be. If you stay in a label too long, it becomes who you are. One must accept the label, and this can take a long time. But then, one must move on and live their best life.
A person choosing to dedicate their life to fighting for the rights of people with mental illness and better mental health needs to expand their world beyond diagnosis in order to show neurotypical people that they are people too with the same hobbies, relationships, and activities. I’ve learned that I need to accept the label, and then move beyond not letting the label define me. My work with my blog is a noble cause, but I need to become a whole person too.
When does diagnosis turn into identity, or does identity soak itself in the diagnosis? Perhaps, this is the great paradoxical riddle. When does having the diagnosis become the end all of one’s life? Or, should it be just a footnote in an otherwise rich life of friends, interests, and passions to make this world better?
When people with mental illness are institutionalized, it becomes the only hope that someday they will be functional in society, live on SSI, take their meds and work a non-stressful job. Can people diagnosed with mental illnesses strive for more? Of course, they can. I recently took a substitute teaching job with grammar and high school students. Working with the students allows me to get out of myself and give back to society. I strive for more by showing up in my work, in activities I love, and in my relationships. The job has given me a new direction I never dreamed of having. Now that I am out in the world, I can see that I am so much more than a diagnosis. The stories I discover from working “other” types of jobs are far funnier than the ones I have from my illness.
There are many neurodivergent artists, actors, programmers, business executives, lawyers, doctors who are open about having a diagnosis. However, I doubt they let it get in their way of consuming their art or passion. Take Britney Spears, Elon Musk, Demi Lovato, or Patrick Kennedy for instance. They all have careers in entertainment, engineering or public service. They are passionate about what they do. They don’t let their diagnosis stop them. They create and invent beyond the confines of diagnosis and change the world with their inventions.
For me, mental illness or mental health can become all-consuming, especially running a niche blog in the field. When I finish my book, I’m sure I will get typecast as a mental illness/mental health writer. This was my goal, but not entirely. I aspire to write and research varying subjects such as climate change, constitutional legal issues, and education policy. I aspire to write novels for teens and adults someday too. This is why I read one book a month on these other topics and a host of different news and feature articles on a variety of subjects. For me, it’s about finding time to pursue unexplored hobbies and letting these take shape around my life too. I love running, indoor cycling, fitness, photography, yoga, cooking, and learning about the world of my cat. I won’t let these other pursuits take the backseat to living in my diagnosis.
I also never want my diagnosis to come between my husband and I. I may talk about my work, but I also try to gauge his interests and plan fun activities together. There is a happy balance between writing about mental health for your day job and letting it become who you are as a person. Sometimes the illness can be the third person in the room. People will see my every mood and action as a result of illness and never as just part of being a human. I struggle with letting go of the label and just experiencing life as it is. Life is messy and it is beautiful. But not everyone shows the messiness. I’ve had to learn to conceal and reveal at the appropriate times.
Life after diagnosis means accepting the explanation of your neurodiversity, and then using the knowledge of your diagnosis to set boundaries of how you can work and live. Another friend of mine, Esme, explores how living with limitations can enhance the creative self and how to establish those crucial boundaries in order to live the creative life.
To live a creative life, one must engage with all one’s senses, see the world with open eyes and mind, and have interests broad, far-reaching and relatable. One must let go of diagnosis eventually. Let the diagnosis be what allows you to understand yourself, and then go on to lead a rich and fulfilling life.