Why She Was (Not?) Misdiagnosed

15 minute read

Choosing to identify as misdiagnosed is a bit rare (do you know any other person or group who identifies this way? please send them our way), more common are mad, neurodivergent, or the identities of psychiatric survivor or ex-patient.

Lauren Kennedy West has garnered significant popularity in being open (along with a YouTube / video production oriented romantic partner) about her diagnosis of schizophrenia, and what she perceived to be symptoms at the time, including the “symptom” of believing the medication she was prescribed was unhelpful.

In this video, which may be worth a watch if you aren’t familiar with her story, she speaks on the subject of misdiagnosis in a way that might be illuminative. She says: “So for all of the people who are suggesting that perhaps there was an element of misdiagnoses on my part given that I have completely put what was deemed schizoaffective disorder into remission, that does feel like a bit of a reductionist approach.”

If West were to attend a Misdiagnosed Anonymous meeting, anything she shared I would not comment on outside of the meeting (what we share in meetings stays in meetings) least of all publicly. But with millions of total views on youtube, I view her as someone who is influential, who is choosing to be a public face with a public viewpoint on these issues, and I feel obligated to offer my own, hopefully supportive (if slightly harsh), analysis.

Interesting to me is her apparent assumption that “all of the people” who suggest an element of misdiagnosis are unified in their understanding of what misdiagnosis would even mean in this context. Would misdiagnosis mean there was a different diagnosis that would have been “correct”? Or is the flaw actually in our society’s system of diagnostic labels, as she herself seems to be expressing earlier in the video? If a medical misdiagnosis indeed happened, a kind of medical negligence, why does she walk her back her earlier analysis? Who does it protect exactly that she should be so careful not to point the finger at those who misdiagnosed her? Or rather, to begin an analysis that might point the finger, but then just leave it there. I feel that there is energy in the video where she is sharing her truth. But, especially when I step into the shoes of a naive viewer unfamiliar with these kinds of stories, I feel we’re left to wonder if anything she says is accurate, or if she values accuracy or coherent narrative. Or are we supposed to feel so charmed by the end of the video that we believe that somehow the key to mental health is simply letting go of any human need for accuracy in facts whatsoever?

As someone who has been influenced by the culture of nonviolent communication, I am a believer in the value “curiosity over accuracy” especially when it comes to empathic listening and seeking to resolve conflict. But accuracy, for me, still has value. I don’t feel the need to become so agreeable that, instead of accepting that I was in fact misdiagnosed, I instead absorb a big mushy but charmingly presentable (to people who haven’t been misdiagnosed) responsibility over the whole situation, as if I really have been the only power in my life, as if the excruciating levels of shame and emotional turmoil never occurred, as if no one but me the misdiagnosed person ought to be held to account for the arising of the situation, and thus someday I will be accepted.

I view agreeableness as a personality scale, but misdiagnosis as a situation that coerces agreeableness beyond human or acceptable limits.

Revealing to me is West’s taking on of personal responsibility for even the potential appearance of “misdiagnosis on my part”, as though we might be imagining that she went ahead and got a serious psychiatric lifelong diagnosis and accompanying soul-deadening medication just to get attention or for some other blameworthy reason. It reveals both her attitude (agreeable) and the gross kind of attitudes she faces, the kinds of attitudes misdiagnosed persons too often feel they must face or even internalize as acceptable.

The attitude that your whole identity is that of an attention seeker ought to be as offensive to someone who identifies as misdiagnosed as it is to someone with a LGBTQ+ identity. It should not be tolerated as a way of understanding yourself, or even as a way that you understand others in your social circle understand you. Such a negative attitude should merely be filtered out like the kidneys filter out toxins.

When you are misdiagnosed with a mental illness, you are not at fault for this, just as you would not be at fault if you were misdiagnosed with a physical illness. It is trauma. It is medical trauma and relational trauma. It is a real situation, and being a situation that you are deeply involved in, and a situation that purports to be about your permanent, inherit, and un-erasable flaws it is difficult to see it objectively. But it is the result of a flawed system. Disguising this by “taking responsibility” may give off a veneer of responsibility to some. But ultimately, it is acting in complicity with our own gaslighting, and the gaslighting of those who care about us and actually deserve our support and responsibility, our functioning self-worth and strength.

As a human being you are actually allowed to feel rage, rage at unfairness or tragedy, or just plain rage because as a human being you are allowed to feel any emotion that humans feel.

West brings up the question of misdiagnosis only to discount it, and perhaps it’s because she’d rather we pay attention to the dietary solution she’s found (Keto Diet) that has corresponded with the remittence and maybe also the reperceiving of past symptoms. If anyone in a support group setting describing a dietary change or system or ritual or shift in perspective that had the kind of major positive effects such as West is describing, I would be entirely for that change for them. I hope MA can be a place where people can authentically celebrate — without feeling the need to make the celebration acceptable for those who don’t understand — their wins, their real moments of recovery in life, their actual emotions and thoughts.

Is it true the reason West so quickly discounts misdiagnosis as a plausible charge to level against the system is that, just as she allowed the misdiagnosis to take place by trusting medical authority (who wouldn’t?), she is still concerned with coming across as an altogether trusting or agreeable personality if not to this authority then to her subscribers, or am over analyzing her here?

Can a lifestyle shift of following the Keto diet be enough to permanently erase the memory and the reality of having being misdiagnosed, of having been ultimately betrayed by own’s medical system and the relationships within that system you thought were valid, of facing stigma and the threat of limits to freedom and of forced medication?

I’m not saying it can’t, because I’m truly trying to sit in a mode of support for someone whose life story / demographic / situation is quite similar to mine. But I am trying to create space where narrative truth and narrative accuracy can carry value, more value than face-saving politeness or surface-level forgiveness, even for a pathetic misdiagnosed person, such as I am, such as you might also be. Pathetic, meaning suffering. But also feeling, having pathos, persuasive.

Mental health and physical health may be related, and the contemplation of their hidden relationships may be food for real thought, inquiry, and even healing. But this doesn’t change the fact that we were misdiagnosed with mental illnesses and not physical ones. Despairingly, I used to even wish I’d been diagnosed cancer. But that was never my situation. My situation was a severe misdiagnosis with mental illness. And for those of us who have faced bitter discrimination or difficulty in establishing ourselves in the world in light of mental health stigma, the pressure and even desire to concoct a suitable outward and unequivocal narrative of healing can be real. The more physical, the more unequivocal. And I guess I’m just wary of narratives that seek to hide mental and emotional anguish under the banner of one-size-can-be-made-to-fit-all physical health solutions. I believe mental and and emotional problems, no matter how closely they might connect to the phenomenon of physical illness and health, are ultimately separate concerns, equally important, and we do ourselves a disservice as thinkers — especially in our capacity to have organized thought in this area — when are seduced by modalities that contend (either the biochemical model of mental illness, or the idea of Keto as a permanent cure for it (again, not trying to discount West’s expressed experience that her overall health and sense of well-being have improved on such a diet)) that two are somehow are the same or coeval.

I sympathize with West’s idea that misdiagnosis could be viewed as reductive, but what I can’t help but hearing from her is that it is her real suffering (yes, with natural human suffering as one of its initial ingredients) from the traumatic experience misdiagnosis is that she is afraid of being reduced. As if someone might credibly say: “Well, because you were seriously misdiagnosed with a severe mental illness, and not actually diagnosed, then you don’t actually suffer.” But she did suffer! Including from misdiagnosis! Let’s not reduce it!

It’s hard though, when she dismisses it herself. Out of fear?

Misdiagnosis as an identity raises questions in the minds of those who encounter it, and perhaps it should — perhaps what’s most needed in our current mental health system is in fact better and more pointed questions. Meanwhile, identifying as neurodivergent as a misdiagnosed person is problematic because then there will be people who you might otherwise enter into authentic relationship with who might assume that neurodivergence is concomitant with requiring the fix of medication or other inappropriate treatment. And this kind of assumption can be absolutely toxic to the well-being of a misdiagnosed person, and their containing of the trauma, to the point where it might be better simply be silent on issues of mental health and illness. Meanwhile, mad, ex-patient, and psychiatric-survivor to me suggests a requirement of anger toward the system as well as despair. You shouldn’t be required to not feel anger just to be seen as human, why should you be required to feel anger just to identify as who and what you are?

For me identifying as misdiagnosed is about occupying the middle territory, showing bravery in the face of inevitable questions, owning my suffering and my difficult past trauma, overcoming the negative peer pressure of misdiagnosis, and presenting as someone who values truth and even accuracy where it matters.