I was diagnosed with bipolar 1 disorder in November of 2013, a little over ten years ago. Against all odds, I never felt ashamed nor did I ever feel the need to hide my diagnosis from anyone. To the shock of many, I have been completely open about it since day one. The story of my life is complex and nuanced, as are all life stories. And my identity is multifaceted and multidimensional, as are all identities. I say this now because even though everything I am about to write is about my journey with bipolar, I want to be clear that the diagnosis is not something that defines me nor is it the most important part of who I am. Yes, it has shaped me in many ways and it has profoundly affected my life, but it is in no way all of me.
The absence of self stigma when one is living with a bipolar diagnosis is extremely rare. I haven’t met anyone else who has been as lucky as I have in this respect. I have only met people whose journey started with deep shame. Stigma is one of the biggest obstacles we face, psychologically and practially. I know people who hide their diagnosis from their long term partners, from their workplaces, and even from their family members. I know stories of people who have been broken up with after disclosing their diagnosis, or have been written off completely as viable partners. I know people who suffer more from the agony of feeling like they can’t disclose their diagnosis to anyone, than from the symptoms of the diagnosis itself. An agony that is amplified by having to navigate journey alone, without any sort of support. This undoubtedly makes recovery much harder than it needs to be, and much less likely. The rates of suicide and suicide attempts amongst my peers is alarmingly high, and stigma plays a very big role.
Practically speaking, it is well known and documented that people with mental health diagnoses are widely discrimianted against. We lose housing and jobs, we are marginalized and mistreated, and we very easily lose our rights and freedoms. We are largely an abused and neglected population. Access to treatment is scarce, and the treatment options that exist are generally ineffective, expensive, traumatizing, and biologically harmful. The way the world treats people with mental health conditions is objectivley shameful, yet somehow very few are actually ashamed. The majority, sadly, are complicit.
Sitgma has allowed allowed us to build a society that somehow accepts and condones the “othering,” of those of us living with severe mental illnesses. Our society is structured in a way that is meant to keep us separate rather than integrated. We are an outgroup. We are “they,” not “us.” We are looked down upon, we are feared, we are categorized as defective. When we are symptomatic we are found to be offensive and we are written off as an unsightly inconvenience. We are expected to be able to control something that is entirely out of our control. During our crises, no one knows how to help and no one actually cares that they don’t know how to help. Rejection, neglect or violence tend to be the very first, very acceptable responses when we are unwell. Psychotic breaks are documented and shared on social media as content that is meant to be mocked. Our symptoms inspire no sympathy and they are seen as our fault. It is therefore acceptable for us to be punished for them. When we are most vulnerable and scared is when we are most hopeless and abandoned.
As extreme as all of this might sound, I say it with certainty because it is what I have repeatedly witnessed or personally experienced. I have been abandoned by my doctors when I’ve had to be hospitalized. I have been neglected and yelled at in emergency rooms instead of being cared for with competence and compassion. I have been handcuffed and tortured by police officers when I’ve been in the midst of a manic episode. I have been separated from my family and locked up with absolutely no explanation. I have been heavily sedated for weeks to the point of losing my functionality and my memory. In the hospital, in the the throes of paranoid psychosis, I have had my clothes ripped off and I have been tied down by men who didn’t care to explain to me that they were going to perform an EKG, nor did they care to let me know that I was safe (because I wasn’t). This, and more. In all of these cases, it is stigma within the healthcare system that is to blame. The very system that is supposed to take care of me, has consistently failed to protect me. For a great deal of us, “psychiatric care” is synonimous with trauma.
I am sharing my experience with the hope that, when you read this, there is a part of you that feels that what I have been put through is wrong and not acceptable. I share it with the hope of shining a light on the very real consequences of stigma in order to somehow reduce it. I know many have tried, and are trying, to fight stigma in the world of mental health, but at the moment it seems to be a losing battle.
I don’t have the answer. I don’t know how to end the stigma. I don’t even know how to put a dent in it. All I can think to do is make one request that is simple, immediately actionable and has the potential to slowly shift people’s internalized mental models that leads them to unknowingly stigmatize those of us with mental health conditions.
My request is this: when I share my diagnosis, please don’t call me brave. If you call me brave, you are telling me that I am sharing something of which I should be ashamed. You are applauding me for making public something you believe I should keep secret. You are letting me know that you, yourself, are stigmatizing me.
I know none of this is done knowingly or with bad intentions. I know you are trying to show support. I am able to to discern between intentions, words and beliefs; and I am lucky that the underlying beliefs behind the words don’t hurt me nor do they make me feel bad about myself. Many of my peers, however, are not so lucky. And just because I can “take it,” doesn’t mean I deserve it nor do I want to perpetuate it. I really want it to stop. We all want it to stop.
The “you are so brave,” response is universal. It is, without fail, the very first response I get whenever I share my diagnosis, whether it be as a public speaker or in private. It is an absolutely ridiculous response. If someone shares any other health ailment, the responses tend to be more along the lines of “I’m sorry you are going through this,” “I hope you get well soon,” “I am here for you.” These responses communicate acceptance, caring, sympathy. “You are so brave for sharing this,” communicates a sense of distaste for what is being shared. It emphasizes some sort of transgression of what is socially acceptable to share. It very clearly categorizes my diagnosis as deserving of shame.
I want to be very clear: having a mental illness is not shameful at all. There is no shame in having a bipolar or schizophrenia diagnosis. There is absolutely nothing shameful about having an organ in our body, in this case our brain, that doesn’t always function like it’s supposed to. Our conditions do not make us undeserving of pride or dignity, nor do they make us inferior in any way. So when I tell you that I have bipolar disorder, please don’t call me brave. Not like that.
If you want to call us brave, do it because you have opened your eyes to the awful things we have to deal with as part of our daily existence. Do it because you see the very unfair world that is being offered to us. If you want to call us brave, do it because you believe in our right to dignity and care and becase you wish things didn’t have to be so hard for us. Because, yes, we are brave. We are brave for fighting, we are brave for enduring, we are brave for staying alive.