BY PETER VARNUM
Let me show you how one psychiatrist viewed me.
She spoke that label into the air between us – “you have bipolar disorder” – and the words hung there for a minute before being trampled by other advice. “You should join support groups with other people who have this illness. There are lots of them around.” She handed me a pamphlet. I was 24.
After one hour, this person had reduced my psychological history to that term. She asked me questions about whether it seemed my body did not turn off when I slept; she asked me about a previous episode that had required hospitalization. After one hour, knowing nothing more than answers to stock questions from a list, she affixed the label that would cause ripple effects in my life for the next decade. Then she sent me on my way.
Let me show you how another psychiatrist viewed me.
“I’m not sure you have bipolar,” she said. “I’ve never seen you in a state of mania or psychosis or depression, but your episodes seem like they are brought on by stress more than anything else.” That brought to mind the very first diagnosis I ever received, at age 17: “brief reactive psychosis.” This psychiatrist, speaking to me when I was about 33, was intrigued by my history and appreciated it when I said the label doesn’t matter, but managing myself does. I was seeing her at her offices in Geneva, where I was living.
The experience of receiving multiple, different or inaccurate diagnoses for mental health challenges is not unique to me, and often psychiatrists will tell their clients that managing mental illness requires patience and tinkering. Much of the time, they are describing the trial and error involved in finding a medication regimen that “works:” prescribing different medications, waiting to observe their effects, and adjusting. In some schools of thought, adding a medication to deal with a side effect is common; in others, the fewer meds the better.
Much less discussed are the effects of a label on someone’s life. I know that for some, embracing a diagnosis or label can be empowering: “when I accepted my diagnosis,” I have heard others say, “I finally felt like there was clarity about what I was experiencing.” Also, breaking stigma of some conditions, such as bipolar, psychosis or schizophrenia, comes with being able to name them without pejorative connotation. I am all for this approach – if it works for you.
The institutional consequences of a label
In my experience, having the label “bipolar” in my medical records has had a negative effect on my adulthood, creating some mere headaches and some catastrophes.
For example, a recent headache has been the process of changing over my driver’s license in Norway, the country where I’ve lived for about a year. My mental health history required I acquire a letter from my doctor explaining that I am fit to drive. She complied, to an extent: she said she would issue a supporting letter, but only recommend validity for a year, saying she didn’t know me well enough to recommend beyond that. I now have to reapply for a driver’s license every year to convince the Norwegian government that it is safe for me to drive – something I have been doing since I was 14 years old.
The psychological consequences of a label
More damaging than any bureaucratic struggle has been the story I have told myself about myself. Self-stigma has always plagued me, and the process of exploring who I am, accepting who I am, and then loving who I am has at times felt like an uphill battle. Like many who have dealt with mental illness, I have sought to “conquer” myself and have felt like a failure when I landed back in the hospital after a period of stability.
Let me make an important distinction: to me, the critical thing is not whether I definitively “have” or “do not have” bipolar disorder. It is about my relationship to myself, and operating with a language that feels comfortable, accurate and useful to me. A history of psychotic episodes has led some doctors to believe they have been precipitated or encouraged by the “underlying condition of bipolar,” but my reality is not characterized by extreme mood swings and volatility. Balling up all the complexity of feelings, thoughts and experiences that led to an episode of psychosis and calling it “bipolar disorder” seems inaccurate to me. And that doctor who made such a proclamation after only an hour of discussion seems to me, to this day, irresponsible.
It has taken over a decade for me to feel powerful enough to stand firm in my rejection not of my experience, but of an inaccurate description of it.
Let me show you me
The main thing, for me, is being honest about my experiences: why they may have occurred, what happened, how they have affected me. My own thinking and belief in myself have evolved; I can say these days that I have had episodes of psychosis, but even that doesn’t tell the whole story of my experience. It’s a useful baseline for communicating part of what I’ve been through, but I don’t fully define those experiences by saying, “I was really stressed, I had an episode of psychosis, and I recovered.” It’s so much more complex than that.
Who I am and how I think are beautiful. My history is empowering, not limiting. It’s getting less important to feed my ego with all the “stuff I’ve done,” and more important to do stuff in a way that is aligned with who I am. I am not my diagnosis; I am not my labels.
This kind of clarity, revelation, unburdening, truth – it doesn’t happen after a one-hour therapy session.
Let me emphasize that for me, the wrong label was actively harmful; that for me, labels in general have little importance. Let me also reiterate that I am keenly aware that for some people, labels are useful. I am able to hold my opinion of myself without judgment for other’s opinions of themselves – whatever works for you should be good enough for anyone, including the doctors who care for you.
At the end of the day, it’s quite simple: let me show you me, as I want to show you me.
Peter Varnum is the Chair of the Board of The Stability Network and Associate Director for Orygen Global, looking after Orygen’s collaboration with the global youth mental health community. Prior to Orygen, he built and led the World Economic Forum’s work on global mental health. He also serves on the Healthy Brains Global Initiative’s Lived Experience Council. He earned a BA in English from Carleton College and an MA in Law and Diplomacy from The Fletcher School at Tufts University and completed the World Economic Forum’s Global Leadership Fellows executive education program.
One response to “Let Me Show You Me”
Dear Peter,
I believe your essay on stigma, self stigma, inaccurate and billable diagnois’ correlates very closely with what we are trying to do at the Mass Mental Health Center Advisory Board.
A group of us, about 7-10, have written a paper based on our research into the name of schizophrenia as being so stigmatized that it needs to be changed to a more accurate, simple and contemporary term.
This will require over time it being changed in the Diagnostic Manual so that it can be paid for by insurance companies.
We have enlisted a survey and observations and support on a national and international level. We have proposed 12 alternative names the most popular being “Altered Perception Syndrome”.
Please feel free to email me so I can put you in touch with our group.
Linda Larson