Misdiagnosed Anonymous

Tag: misdiagnosed

  • Madness

    Madness

    If what you are looking for is a concrete definition of madness, this isn’t your article. But chances are, especially if you are an adult, your definition of madness or psychosis is already fairly formed. Maybe it’s an image-based, archetypal, or totemic definition arrived at via material in film or other forms of media. Or maybe it’s an internal definition, wherein you hold your own actions as either mad or not and seek to improve. If you are authoritarian, it may be reactively obvious to you that madness is bad, the enemy of order. If you identify as anti-authoritarian, liberal, or as an activist, it’s also possible that you bravely view at least certain kinds of madness as being essential for progress in our human project.

    This article aims to make elucidate for members of Misdiagnosed Anonymous some of our views on madness, the word, the concept, the action.

    Lisa Archibald writes for Mad In America

    The term “mad” has been reclaimed intentionally as a deliberate interruption or sabotage of the dominant psychiatric perspective. It challenges the entire basis of the medical framework which is that people have illnesses or disorders. Prior to the last 200 years in history, “madness” was a widely accepted term in society and was not a medical term. The reclamation of “mad” is a provocation to psychiatry as it is a complete rejection of their diagnostic expertise and power.

    The Misdiagnosed identity is open to persons who identity as “mad” or as “mad activists”.

    However, the mission of Misdiagnosed Anonymous is to fulfill a need for regular (occurring on a regular basis) mad-friendly support meetings. As much as we admire MadInAmerica, we have noticed a certain pattern where it comes to the keeping of regular meetings. There was Mad Summer Camp, long live Mad Summer Camp (it didn’t end up happening the year I wanted to go and no longer seems to be a regular occurence)! There was this incredible online poetry slam, billed as the first as if to indicate these might become regular occurrences. And yet there haven’t been so far. The organization is improving, and was recently rated as “Mostly Factual” by Media Bias Fact Check which is quite a bit more than we can say for the mainstream media’s reporting of The Star*d Study. We love Mad In America, and hope it continues doing what it does best: journalism, activism, sharp critiques of psychiatry, and speaking truth to power. However, it may very well be that regularly occurring support groups are not what fuels the kind of incisive journalistic viewpoints that MIA supports. And so, as a person who values the support group experience, how I do reconcile this?

    Mad in America was founded by journalist Robert Whitaker after responding with admirable compassion when receiving feedback from misdiagnosed persons after his scorching expose / history of mental illness practice, a book by the same name. Whitaker was never himself misdiagnosed with a mental illness, or at least not by the mental health industry (spurious pharmaceutical-funded op-eds notwithstanding). Mad in America has a journalists ethics at its core, and quite frankly, from where we sit at Misdiagnosed Anonymous, deserves all the respect in the world.

    Anyone can claim to be a “mad person” or a “mad activist” no matter their biography. And once claimed, they can also back away from this identity at any time and for any reason. Maybe they were being simply more generous than they had realized, or actually it wasn’t the political cause that speaks to them the most out of all the causes to choose from. As Misdiagnosed Persons, we appreciate the support, or the kind thoughts, or the… madness?

    Misdiagnosis is a situation that seriously derails and disrupts the lives of those who it impacts, and can lead to the worst kind of trauma and self-negative thinking: the kind that many in power in our mental health care system would prefer to imagine doesn’t exist much less reserve empathy for. It is a concrete situation that is beyond exists within the relationship between the misdiagnosed person, their state, the Western institution of psychiatry (the DSM committee moreso than psychoanalysts and other factions that resist the biochemical model), and too often family members or “caregivers” who feel a sense of obligation to act as surrogates of state power. In its concreteness, it is beyond the power of the misdiagnosed person to escape from their situation, and as post Osheroff V Chestnut Diagnosis Theory’s illnesses are considered to be “lifelong”, despair and concomitant compliance are counted on as the only reasonable reactions. After misdiagnosis, any minor failure (we all fail before we succeed) and any minor misbehavior (we all misbehave at times, especially when we are young) are conflated by the system as proof that the misdiagnosed person “deserves” the punishment of their absurd situation.

    Some days we get mad. Rage, even. Other days we’re just trying to make the best of our lives. Either way the system and our situation in it (by the very definition we have been ordered to accept) does not change. It is good to read articles supporting or clarifying our views or internal critiques of psychiatry. And yet, there remains an intense aloneness when we are not talking, sighing, hearing, communing on a regular basis with those who understood where we’re coming from, and those we understand.

    We are inspired by many of the Twelve Step programs that exist today and their valuing of humanist, emotional, and moral inquiry and regular support. We are inspired to create a Twelve Step program that fits and our needs. For most of us, alcohol has been a major problem in our lives (many of us have avoided it early in life to avoid possible bad reactions and have never developed a habit with it or taste for it) so for obvious reasons we can’t attend AA. But like the blurring effects of alcohol, the malicious confusions of misdiagnosis have blurred us. At Misdiagnosis Anonymous we find solace, accountability, and truth when we hear others speak. And in our choice to commit, we discover courage, power, and the inspiration to live our best lives.

    It is our hope that mad persons and mad activists feel welcome in our ranks. It also our hope that persons among us who enjoy order and regularity, accuracy, and organization feel equally welcome. We have a blog and are on the lookout for voices to join us in writing. But primarily, we believe in the liquid nourishment that is regular talking and sharing to relieve us where we have been so needlessly and desperately parched.

    We value madness and appreciate its purpose. My madness and yours.

    Structure and order also are deep values of ours, as we build an organization of real strength, real support, lasting kindness.

    Though we all contain various parts, we are all fundamentally whole.


  • Why Misdiagnosed Deserves To Exist as an Identity

    Why Misdiagnosed Deserves To Exist as an Identity

    There are so many (unconvincing for misdiagnosed persons) reasons why it should not exist.

    • If you say “misdiagnosed” someone might assume you’re asking for seconds, for another (more severe?) diagnosis
    • The path of healing and recovery is about forgiveness. By claiming to have been misdiagnosed, it’s almost as if you haven’t chosen to forgive your doctors, or our mental health system, or the system of capitalism from which it arises
    • It is four whole syllables long, what a mouthful!
    • It reminds people of mental patients who shout: “I was MISDIAGNOSED” as if their lives and needs for integrity almost depended on someone accepting this
    • It’s a threat to the ordered (and apparently rather fragile) world of Capital Psychiatry and the (B?)DSM, and the powers that be shall not have it!
    • If you say “misdiagnosed” an evil leprechaun in a grey pinstripe suit will come and, gosh, we just… we just can’t have it!

    But then we are inevitably confronted with unchanging fact that leprechauns do not exist except in fables and stories, but the experiences and facts of your misdiagnosis did and do. It exists! So to have a word for it, a word besides “it” or “the bad thing that happened to me or with me or whatever” or “my past” or “my struggle” or “yeah that fucking nightmare huh”, to contain it in a single descriptive if not perfect word has immense value.

    No one goes around wanting to be misdiagnosed. And yet, severe and traumatic experiences of misdiagnosis do happen to a certain group of people. These people deserve an identity.

    Much ink has been spilled reclaiming various terms such as madness, and this extends to mad activism and mad pride. While reclaiming terms of hate have functioned well for identity politics in the area of sexual difference, the area mental health and mental difference operates with different dynamics. It isn’t necessarily wrong for a misdiagnosed person to attempt to reclaim madness, but it feels to us a spiritually onerous burden to suggest that they must retain deep anger at the system that misdiagnosis along with a stance of activism to merely be regarded as having an identity. When the system purveys the idea that misdiagnosed persons must be “one of the good mentally ill people” to then earn a facsimile of respect, demanding they must also be “one of the good mad activists” to be seen as truly intelligent, truly liberal, or truly engaged with reality only heightens the impossibility of their situation

    “Psychiatric survivor” and “ex-patient” are also words that are used to mean something roughly similar, and already exist as acceptable identities in certain circles — though none with active or regular peer support meetings as far as we can tell. “Psychiatric survivor” is seven syllables, three more than misdiagnosed. We have no beef with anyone who identifies as a psychiatric survivor. We also have not yet witnessed any sustaining efforts for there to be support groups for such individuals — though for all we know they could be on an island somewhere. Comparatively, “misdiagnosed” and “misdiagnosed person” suggest not that psychiatry is evil or that psychiatrists are evil (extreme or idiosyncratic views) but that a mistake was made. Can the world not allow that mistakes are occasionally made in a particular field of study? “Survivor” also implies that no talking or sitting should be in order, only escape. Contrastingly, with “Misdiagnosed” as an identity, we focus on our own lived experience, and leave room for analysis and careful thought, that those of us who feel called to engage as patients in therapy as we see fit.

    In reality, my identity as a misdiagnosed person does not pose any threat to psychiatry and neither would yours, should you choose to adopt one. In reality, honest feedback is a kind of support, even if harsh. The worst that could happen to psychiatry might be: we cause greater attention to mistakes that have been made and are made and better processes for more collaborative and accurate diagnosis processes. This is not to say we ignore power imbalances or are interested in vain compromise. Good intentions are not enough for change, commitment and strength are also needed. The misdiagnosed founders of NAMI may have started with good intentions, but in their compliance with Diagnosis Theory, it was perhaps inevitable that they accepted pharmaceutical dollars, a corrupting influence and capitulation to the biochemical model that renders their claims of activism vacuous and their culture toxic. Mad activists calling for revolution are not necessarily foolish in their calls.

    We as allied misdiagnosed persons hope to cause a revolution in the sense of how psychiatry looks at the biochemical model of mental illness that has been prevalent if not wildly addictive for the past forty years since at least Osheroff V Chestnut. Once more accurate information comes to light, psychiatry and psychiatrists may choose of their volition, in the language of step four, of The Twelve Steps “make a searching and fearless moral inventory” of themselves. We concede ahead of time that this might seem preposterous to psychiatry’s more committed detractors. But it is our belief that anyone can let go of the harmful pattern of misdiagnosing others and themselves.

    I am a misdiagnosed person is a way of saying:

    • Facts and information and learning (including even book learning sometimes!) are important to me, as is useful feedback
    • I have faith that the people who matter to me will understand that I am not insane (and maybe even never have been, though indeed, that is an insanely high bar )
    • I am an honest person but struggled in the past with the concept of healthy denial
    • I deserve to exist as a person in this world, despite all of my relational and psychological trauma from my experiences of misdiagnosis telling me I do not
    • I do not necessarily agree with our mental health system of diagnosis, as they may (in the language of Nonviolent Communication on diagnosing others ) ultimately do more harm than good by creating conditions for tragic self-fulfilling prophecy