Editor’s note: This blog first appeared on Monica Cassani’s Everything Matters Beyond Meds
“At this moment, a thousand valves have opened in my head, and I must let myself flow in a river of words, or I shall choke.” – Fyodor Dostoyevsky
This bodymind named Ingrid has so much to say…and what seeks expression is not just for the sake of my own healing, but to serve as a beacon for anyone on a similar path, who needs to know they are not alone. Mine is a path of emerging from profound trauma, adversity, and lack, and of living in the world as highly sensitive, gifted, neurodiverse, and spiritually awakening. We are the people who so often find ourselves in the offices of professional helpers…and I will write for them, too, as it is imperative that those who would presume to walk with us, understand what actually helps…and be willing to challenge that which does not…even though this will take them straight into the heart of their own pain.
I began my adult life as a professional helper, with degrees in psychology and clinical social work. I worked for a number of years as a psychiatric case manager, and then later, as a psychotherapist. But more importantly, I, too, became a ‘client’ or ‘patient’ of hundreds of professional (and non-professional) helpers over the past several decades…and many over extended periods of time. Tragically, my vulnerability and my desperation to heal my own personal pain became twisted, co-opted, and misunderstood in a thousand gross and subtle ways…resulting ultimately in at least 30 more years of trauma, chronic illness…and a lifetime lost. The bulk of this time was lost to misdiagnosis, mistreatment, and excessive drugging in the psychiatric system. Careless or ignorant prescribing by doctors also resulted in 18 concurrent years of heavy opiate and benzodiazepine addiction… and the medical-industrial complex in general (which I must access due to some very real physical issues) offered misguided information, treatments, procedures, and surgeries which only added to my pain and limitation. What led to my first psychiatric hospitalization in 1989 were profound trauma after effects, and a disabling depression (with extreme insomnia and anorexia)…and this was immediately preceded by abuse memories and nightmares that unexpectedly emerged during my graduate studies.
I have survived three suicide attempts, multiple accidental overdoses, and endless numbers of abrupt withdrawals from psychiatric drugs, benzodiazepines, and opiates…all carried out under ‘medical supervision’, by doctors utterly ignorant to issues of tolerance, addiction, and withdrawal. I have been admitted to hospitals, rehabs, or partial hospitals 25 times in all…with stays ranging anywhere from three days to three years. I’ve been placed on 50-60 different medications, in varying endless combinations, over the years while being given no understanding of their efficacy, safety, and side effects. (Today I am certain that these drugs, or their abrupt withdrawal, contributed to many of my ‘symptoms’, as well as two of my suicide attempts). I have been offered no support to come off medications, as I was told this would ‘destabilize’ me. Similarly, I was told that talking about the past abuse would also destabilize me…that is, if I was even believed in the first place. I’ve been locked in padded rooms, physically tackled and shot up with drugs by men who did not appear to know their own strength (or did they?), spent hours lying terrified in 4-point restraints and in sheet restraints, and been yelled at, shamed, provoked, and ignored more times than I ever care to recall. I have left a veritable map of scars on my own body from when I had no other language for my pain, no other way to soothe myself, and no safe space in which to be held…and I have known years so dark and devoid of hope and selfhood that it is incomprehensible to me that I am here now…with these words…and with any identity at all. It has been a long and arduous climb out of hell, and I am still climbing. I have been doing intensive trauma work now for a number of years, and to a degree that I cannot even convey. It has taken thousands upon thousands of hours of being seen and treated differently, by a series of helpers, for me to speak as I am speaking now. My journey is far from over. I seldom forget that I’m not supposed to be here…but the more life I gain, the more I dare to want. I am now sober ten years, and in my fifth year of a careful withdrawal from high doses of six different psychiatric medications (four antidepressants, one antipsychotic, and one anticonvulsant). I do this while also having chronic fatigue, and undergoing repeated spine and joint surgeries, having no supportive family or friends in my physical world, and watching my mother (the closest thing I had to support in the past) slowly disappear in the cruelest of ways, from Alzheimer’s. I live alone, in the same tiny apartment I’ve been in since the 1980’s. At 59, my life and my hope is only now beginning…and there is so much I have never experienced. There is so much I have lost. My writing is an attempt to mine the gold from this pain.
Over my lifetime, I have seen psychologists, psychiatrists, social workers, addictions counselors, peer counselors, pastors, energy healers, bodyworkers, acupuncturists, massage therapists, art therapists, medical doctors, surgeons, physical therapists, occupational therapists, nurse practitioners, osteopaths, and more. Rare have been those who have actually helped me, and finding them has involved long and painful searching, much travel, much retraumatization, and often, large amounts of money…which for most of my life was unavailable to me…and for many others, is not and never will be available. Despite holding fast, and with endless gratitude, to the resources I am privileged to have more recently secured, I do sometimes experience survivor’s guilt. I feel in the depths of my soul the pain of those who cannot access what they need to heal…as it invariably is not what insurances cover (or cover enough of), or is not what is widely available, especially in certain parts of the country and world. And while it’s true that I’ve fought hard and searched hard for many years to get to the place I am in now, I will never be so arrogant as to proclaim that it’s just a matter of hard work to find a way out.
I entered the system as someone I only now know myself to be, after years of ongoing healing, but could not have known then: An exquisitely sensitive and gifted person with significant developmental traumas, insecure and disorganized attachments, and sensory processing differences. The system’s response was to label me as having ‘Borderline Personality Disorder’, and this pejorative and invented disease category would effectively ensure that no one would ever hear the language of my pain, terror, and rage again…or hold forth any hope for me as a human being…if I was even seen as human at all. I see now that the ‘borderline’ label represents the shadow of our abusive and patriarchal power structures, which have great need to deny abuses (especially sexual), and to pathologize and scapegoat the sensitive, the feminine, and the different. So often we are the ‘canaries in the coal mine’, registering precisely what is wrong in a family, a group, an organization, a system, or in the larger world. I believe now that what really sickens us is holding these painful truths in our bodies, while being surrounded or controlled by those who simply will not see…to the point that they must sacrifice our lives for their worldview. It is convenient, and protective of powerful people and systems, to isolate and silence those of us who register the truth so deep within our bones that it hurts. We are not crazy…we never were…we are being driven crazy by systemic ignorance, limitation, fragmentation, denial, arrogance, and gaslighting. The experience of carrying this label is soul-annihilating in a way that is difficult to convey. It is as murderous of the spirit as any original trauma. (I must add that there is something about my experiences with it, which makes the current expressions of my black brothers and sisters feel hauntingly familiar, and my heart aches with them daily. This world runs on the oppression, suppression, pathologization, and criminalization of traumatized truth-speakers. The world fears being harmed by us, making US the monsters, when all we want is to live as equals, with our histories and life circumstances honored. The ‘harm’ they fear is actually their being forced to reckon with their own traumas…and in some cases, their privilege.)
It is important that you understand, however, that I only know all of this now…and that this ‘knowing’ needed to evolve (as it still evolves) with gradual self-education, direct personal experiences, and the gentle and respectful suggestions from others of new narratives and possibilities. (I was only helped to understand that I have sensory processing differences a few months ago. I had no idea of such things.) I have a profound understanding of how people can be forced into traditional treatment systems over a lifetime, and what it is that keeps them there. Many of us are hurting, and just want some relief…and want someone to validate our pain. We may never have found safe support in our families or communities, and are now far too traumatized to reach for it socially, even when it might be there. We may easily become targets of abusive and hurtful people in groups. We need and deserve private, safe, one-on-one help…the type of help where safe space is held at a higher and more reliable level…and in my experience, this means professional support, because no friend or unpaid helper will provide a clean, consistent, and attentive enough presence, for as long and as often as many of us need. But we may not have financial or physical access to private or alternative care…and so turn to more public, less flexible systems, like the public mental health system, for help. Some of us may also simply have no awareness of other narratives, besides medical model psychiatry…for any number of understandable reasons. (At the time that I was chemically put to sleep, the DSM and the newer psychiatric drugs were all the rage, and there simply were no other narratives to be found.) And some people report deriving benefit from psychiatric medications and supports, and we cannot deny them this if we have never walked in their shoes. Therefore, there is no place for shaming, judging, or ‘hitting people over the head’ with what we may know about alternatives to the DSM and psychotropics. We must respectfully allow each person their own process of unfolding, within their own particular set of circumstances. It becomes far too easy to judge or advise someone when you have never walked their path, and witnessed what they have already tried…and what their particular limitations and resources are. Those of us in the movement must strive for patience and compassion for all…and never self-righteousness or smugness. If someone had come at me that way a few years ago, I likely would have not heard a word they said.
I experience my life now as one awakening from a coma. Every day I learn another thing that most people my age take for granted, and every day with my helpers (neither from the mental health system) I experience new parts of my neurobiology coming online…either again, or for the very first time. I have a lot to say now, though I often need a great deal of quiet and safety to sort through the jumble of awarenesses fighting for attention in my mind. (I purchased and learned to use a laptop, and Microsoft Word, just to produce this piece. I still type with two fingers.) I have learned a thing or two about what is helpful for healing, and what is not…and most tragically of all, what is damaging. I have spent many years healing not only from early trauma and lack, but from retraumatization in spaces that were supposed to be safe. Dr. Steven Silver has called this ‘sanctuary trauma’, saying it “occurs when an individual who suffered a severe stressor next encounters what was expected to be a supportive and protective environment, and discovers only more trauma”. In some cases, for me, the sanctuary trauma involved direct cruelty or dehumanization…but it also involved the placing of my precious life force, and my ability to process both pain and love, into a pharmaceutical ‘suspended animation’. It further involved teaching me a false narrative of who I was, and who I could become. I am reminded of George Orwell’s quote that “The most effective way to destroy people is to deny and obliterate their own understanding of their history.”
My world became so small…and why would I be looking for anything else, if I was robbed of the ability to even conceive of it? Psychotropics, as Dr. Peter Breggin has explained, diminished my sense of ‘agency’…my sense of life force and creative power, and connectedness to the world around me. I would never have realized this, if I weren’t for these things now returning to me, as I detox off of the drugs. It is astounding how much they changed me, and robbed me (and the world) of myself, and it all happened so gradually…and all while being told that my diagnosed condition was chronic…and apparently permanent. I have actually seen a psychiatrist’s note in my chart that read “not expected to improve”. I did not understand, for many years, that all of these official pronouncements were based in a flawed paradigm. I was already raised (by family, and by society) to not question authority, and to not trust or honor my own thoughts and feelings…and I think some of us who have been raised this way are sitting ducks for abuse by psychiatry, or any other relationships on which we later become dependent in any way. No wonder so many trauma and abuse survivors are found in psychiatric populations. It is not like we ever heard a more loving and hopeful narrative about ourselves before…and in fact, the suffering this caused is what has brought us to the doors of all the professional helpers in the first place.
Right now, in every corner of our world, professionals of all kinds are offering things to vulnerable people that are nothing short of damaging…all while perpetuating the belief that any difficulty a client has, lies only in the hopeless pathology or personal failings of that client…and never in how the client is being met. More often than not, this retraumatization happens at the hands not of willfully evil people, but of people simply exercising what they have been educated and trained to do…or not exercising what they have not been taught or trained to do…within flawed models for understanding and helping human pain. Often, they do what they do without sufficient support or supervision themselves, and with client loads that are too high (I know mine were)…and whether excusable or not, helpers often follow what they observe their colleagues doing, in broken corrupted, and overwhelmed systems. Not towing the party line could invite punishment and isolation for practitioners, too…in organizations and professional groups. When thinking of the average, lower-level mental health or medical worker, I recall the words of one spiritual figure who simply said, “they know not what they do”.
But the bottom line is this: Clients are regularly offered things that at best aren’t helpful, and at worst are harmful. In my experience, it is the rule rather than the exception, particularly for the developmentally traumatized, the highly sensitive, and the neurodiverse. And it is all of this, if not known to the person seeking help, that further destroys their hope…because if the ‘best’ helpers with the ‘best’ education and training are not able to help me, where then is my way out? Rather than having an awareness that actual help was not provided, the individual concludes that they are simply beyond help, and may be told this as well. George Bernard Shaw once said “The single biggest problem in communication is the illusion that it has taken place.” Entire professions, like psychiatry, can actually be built on pathologizing and shaming people for one’s own inability to sit in unknowing and unfolding, and to sit with trauma, adversity, and difference…and in a way that doesn’t diminish the inherent wisdom and strength of the other, or use the other as ego food.
Helping systems, as well as the educational and training systems connected to them, often benefit from, or even owe their existence to, the continued abuses of people receiving services in those systems. Even if not consciously intended, they are abuses nonetheless. These systems would collapse should it ever become mandatory for them to own and remedy the ways in which they cause harm. Audre Lorde proclaimed that “the master’s tools will never dismantle the master’s house”…indicating that powerful and profitable systems will never provide the tools needed to disrupt their status quo. That is why it is imperative that some of us bring awareness from outside of a given professional system…or outside of the helping professions in general. I think here immediately of the powerful and transformative work of Robert Whitaker, whose ‘Anatomy of An Epidemic” helped encourage my current, long-term withdrawal from decades of psychiatric medications, under which much of my life force and awareness was slumbering. What a significant piece of journalism this was! I thank Will Hall (a counselor to me in the early years of my detox) for gently led me to Whitaker’s book…among other things.
But if I may, I also think of my own emerging voice…because in assessing the efficacy of the help being offered by any profession, it would seem to me that nothing ought grab our attention more than the voices of the service recipients of that profession. We must listen to service-users, past and present…and sometimes, more than anyone else. And contrary to common opinion, I believe that with psychiatric service users, the more services a person has received, and the longer they have received them, the greater the wisdom they have acquired…and that some of us are sitting on a veritable goldmine of awareness and insight, although we may need safe, longer-term containers in which to unpack our stories. For some of us, with these longer histories of being unmet, our wisdom is prone to being trapped in wordless, visceral, and easily activated places, and expressed in ways that others cannot comprehend…particularly when we do not feel safe or seen (because often we are not). We may need environments and supports that are often not found in the activist and peer communities…to not simply to ‘be members’, but to speak, teach, and lead there as well.
Because, much like the psychiatric system itself, many in the current activist and peer communities do not know how to recognize or hold safe space for the many gifts inside of us. In contributing to and leading this movement, we cannot only look to those who, for example, are comfortable in large groups, who socialize and speak with ease, who are reliably healthy and energetic, or who even easily leave their homes. We cannot only look to those who appear extroverted and confident, or who are comfortable with competing and marketing themselves. We cannot only look to those who have already cleaned up fairly nicely, and who can tell their own story with clarity. (Extreme trauma, dissociation, institutional brainwashing, heavy psychotropics, and addictions all make this more challenging.) We cannot only look to those who form connections and take in support with ease…or even at all. It is not enough to allow someone to ‘belong’ to a community without meeting them where they are, at eye level, because you believe that they hold wisdom that you need…and that the world needs. I know in my bones now, the difference between being ‘humored’, or perhaps used for general labor, and ‘likes’, and being respected as an equal with potential to teach and lead. I insist on being treated as an equal, despite any and all limitations that I may have. My visible vulnerability and limitation may actually be my greatest strengths. Decades of trauma may have ravaged my neurobiology and my body, but I am still very much inside of here. And I’m not the only one. Further, it is a mistake to assume that someone who has been non-functional, isolated, and institutionalized for so long, must have something more serious and unchangeable wrong with them. If my life story can teach anything, it is this very fact. Many folk have no idea how and why others wind up in the psychiatric system for so long. I understand it quite well.
Generally speaking, the notion of ‘client wisdom’ can be challenging for people, particularly when discussing clients of the mental health system, where perceptions and experiences of service-users are regularly denied and disbelieved…often reflexively, and with astounding ease. I have found this to be especially true when professionals themselves are being challenged. Few have the security and ego strength to tolerate it. A significant problem overall is that as a society (let alone as members of helping professions), we are prone to ‘otherizing’ and diminishing anyone who openly suffers, shows their vulnerability, and seeks help, whether because of emotional pain, physical illness, spiritual crisis, or insufficient resourcing. This seems to be particularly true if they don’t provide us with an easy ‘happy ending’ story, or don’t readily embrace what we decide that they need. Their testimony is thus more easily dismissed or pathologized by professional helpers, who are too often convinced that they have the best understanding of what causes distress, and what will alleviate it…and who often mistake the sense of control and mastery that comes from their ‘role’, for actually being in a healed and wise place. And absolutely nothing could be further from the truth. Truly, it is not all that hard to become a professional helper. What’s hard is actually being helpful.
The medical and mental health systems in particular run on the unquestioned belief in titles and labels…as if the nuanced experience of human pain, and how it asks to be met, could ever be so neatly classified and catalogued. We have adopted an approach to human suffering which categorizes, pathologizes, and commodifies the ways in which it expresses itself…and then divorces it from all individual context and history. We further fragment any help offered into systems, disciplines, specialties, and modalities that interpret the same person’s distress in vastly different ways, then have little meaningful communication or collaboration among them. Indeed, practitioners of different backgrounds often oppose one another…but leave the client to hold, alone, their disagreement or displeasure with one another. This is particularly tragic for complex, developmental trauma survivors, who, both because of their early imprinting, and the way this remains unmet by helpers over time, often wind up suffering profoundly in body, mind, and spirit…and invariably find themselves as clients in multiple treatment systems, as I have: medical, mental health, addiction, alternative, etc….each one vastly different, and each largely disconnected from the other. Where they do learn about approaches outside of their discipline, it is generally a surface (and often outdated) understanding, and not fully integrated with their own. This absolutely contributed to my own near-demise: The fragmentation among systems, and the fragmentation within them, is unequivocally lethal.
We separate mind from body, body parts from one another, and all of it from energy and spirit. We give labels to endless ‘disorders’ as if they are not normal reactions to toxic or missing things…then create drugs and modalities to stop ‘symptoms’ that spring from causes that are never acknowledged, let alone addressed. We don’t see that what we call ‘symptoms’ are often messengers that seek to guide us back to what hurts, or what’s missing… so we fail to learn their language, and instead, force our own upon them. We refuse to stay quiet and curious long enough to allow the story to reveal itself. We lack the humility to acknowledge what we don’t know, what we have never experienced, or where we might be blind…particularly when to hear the painful story of another means acknowledging privilege…or means remembering our own. These are the very things educational and training programs can fail to model and support, as they are built far more on the ‘acquirement of skills’ than on the removal of personal blocks, biases, and blind spots. Suffering is thus compounded by our inability to heed the messengers of such things as incest, child abuse, violence, disrupted and disorganized early attachments, intergenerational trauma, systemic oppression, chronic poverty and adversity…and more importantly, any complex combination of these things.
Care fragments, and clients fall through the cracks…but we deny that our practices are flawed, and instead declare people as hopelessly ill, or as lazy, unmotivated, and manipulative. This always reminds me of the mentality seen in religious and spiritual cults (something I have also experienced, in childhood), where any distress a member suffers is attributed to that person’s failure to follow the teachings and rituals set forth by the leader. We don’t consider the failures of what is being offered…which very much includes what is embodied and held, unprocessed and unexamined, in the nervous system of each and every individual practitioner.
Our systems and institutions hold tremendous power. They are profitable for many. They benefit from not being challenged. They benefit from silencing dissent. People given psychiatric labels are easily silenced and discredited. Consider the disturbing implications of this, when the vast majority of psychiatric clients are, in fact, survivors of profound trauma, adversity, and lack. What a revolting way for injustices to continue, unchecked, and with no end in sight. Individual practitioners can also benefit from not being challenged, and holding fast to any power and knowledge differential. Excessive ego investment in ‘being the helper’ offers a sense of control, security, and mastery, deflecting from one’s own unhealed wounding, and assuaging fears of one’s own vulnerability. So much ego-driven and fear-driven scrambling, across so many helping fields, to possess some ‘exclusive knowing’…to offer the modality, amongst the endless thousands, is without question, killing people like me. And so I ask: Who among you is brave enough to see and hold whatever suffering presents itself, both in yourself and in others, with whatever time and love is needed for healing? No intellectual answers…no learned modalities…no prescribed ‘solutions’…just clean, safe, loving presence. No modality matters if not built on this foundation. Simple perhaps, but not easy. Anyone who presumes to help must first commit to going within…anyone who avoids this is using their role as defense, an escape, or a vanity project.
My current interest is not so much in ‘fighting’ against our systems in a way that demonizes all the people who work in them…as I remember well when, as both a clinician and a client, I was utterly (but not maliciously) blind to the bigger picture, and to many of the failures and abuses inherent in our helping systems. Additionally, I have experienced some genuine care and kindness by system employees…and these moments are burned in my memory, too. (One day I may write about them…just to underscore how small actions can be so large.) I’m interested now, as someone who has been on both sides, in giving voice to what I have learned…in bringing awareness, in teaching, and always above everything, in validating anyone who has been where I’ve been, and perhaps cannot find their own words at the moment. In the future, I hope to provide more detail (possibly in written collaboration with my current helpers, who are not mental health practitioners) about just how it is that I am finding my way out of this wordless, disorganized, activated, overstimulated, and seemingly hopeless hell. My personal offerings will not come packaged beautifully, neatly tied up in red ribbon. The journey continues, and I will never pretend to have arrived at its end. I think comfort and ‘inspiration’ often come more from struggle shared by one still choosing life, than by all the happy endings and polished-looking websites in the world. It may be less marketable, but that has never really been my interest.
I know that right now, there are thousands upon thousands of people trapped in institutions, in systems, or inside of themselves, being provoked, patronized, and pathologized by professionals who fail to recognize or speak the language of brutalized, unmet, sensitive, or atypical neurobiology. Professional response to what has been brutalized or unmet, is further brutalization and abandonment. This can be anything from a violent physical act, to an insidious and ill-timed shift in energy and presence…but over and over again, harm is compounded, and all under the mantle of socially sanctioned ‘care’. If a person does not know this, cannot name it, or cannot escape from it, it is in and of itself crazymaking.
The phrases ‘trauma-informed’ and ‘trauma-sensitive’ are everywhere now, bandied about by ever-increasing numbers of professionals and organizations, to describe themselves. I’m grateful that there exists any awareness at all, now, of things that were previously unknown and unspoken. The writings of Gabor Mate, Bessel van der Kolk, Peter Levine, and others played a profound role in my emergence from the darkness, and in my ability to tell the true story of who I am, and what happened to me. However, I have (as many people do), also needed safe space-holders, in the form of real-world helpers…and have discovered that, in actual practice, very, very few ‘trauma-informed’ helpers have even remotely had the ability to hold the space that I needed, in order to heal. This has been true even for professionals highly trained in trauma modalities. Individuals like me, with profound preverbal traumas and attachment deficits (invariably compounded by years and years of sanctuary trauma) will need something far more nuanced, patient, flexible, and committed than the average trauma survivor. More than anything, we will require the clean and compassionate presence of someone who has met their own wounding, who continues to meet their own wounding, who recognizes just how much they don’t know, and who has the humility to learn from their clients and to be open to being changed by the relationship, too…no matter how uncomfortable or inconvenient new awarenesses may be. People like me struggle profoundly to connect and feel safe, though it bears saying that we unequivocally do not need to be patronized or diminished for it. We are not children, and we most certainly are not weak. We require safe, consistent, eye-level relationship…and the ability to provide this is not at all a ‘treatment modality’, but rather, a way of being with another human being. It is the authentic, embodied energy with which you meet someone, and hold space around their unfolding experience. It is the grounded, soothed, regulated nervous system that you offer them, with open heart and open mind…and you will never be able to meet in another what you have not first met in yourself, or, what you acknowledge you have never experienced and need to learn about…from the one experiencing it. Along with skill, this requires humility, bravery, and love.
I read recently that psychologist Carl Rogers (a major influence of mine in graduate school) was dismayed by the way in which his teachings on empathy and unconditional positive regard were later presented by others as treatment ‘techniques’, rather than being understood as the conditions needed for another person to relax, unfold, and grow. (Therapist here is more soil than gardener.) This is, in part, the problem I experience with the people, places, and practices meant to help the traumatized today: They are quantifying, intellectualizing, and externalizing what is, in reality, a core humanity. Some education is required, yes. But being a safe container, or ’compassionate witness’, as Alice Miller so eloquently called it, requires less the acquirement of quantifiable skills, and more the shedding of excessive ego, denial, and defense, so as to be fully energetically present to the experiences of another. And it absolutely requires a commitment to going within and addressing your own pain and limitation, so as not to pass this on to those you would presume to help. I have, as one therapist told me, an ‘exquisitely sensitive bullshit meter’ now, for when someone is not really in the room, but is putting on a caring display. It has to be authentic and embodied.
Most educational and training programs, for all kinds of professional helpers, fail to sufficiently model for students the importance of humility, vulnerability, and being in not-knowing…and fail to emphasize the need for continuous self-work, regardless of how long in practice. If you are a vessel, you must remain as clear as possible. The more we do not normalize for students the ideas of being fallible, vulnerable, in partnership with clients, and in need of ongoing personal work, the more these things will go underground, contaminating the healing connection. One of my dreams would be to help teach students in all types of educational and training settings, so that they might help (and not further hurt) the traumatized and the different. Sadly, being ‘a trauma survivor who is traumatized by a trauma therapist’ is not at all uncommon. (Bodyworkers and energy healers need help here, too.)
Some may think that the remedy for what is lacking among professionals is the exclusive reliance upon peer support…but I would disagree. Peer support, as it stands now, and as I have experienced it, is not always a place for safe community and deeper healing. I personally experienced it as abusive, abandoning, exclusionary, and ego-driven on many occasions. Some will balk at this statement, saying that I am hurting the mission…forgetting that I am exactly the person this mission should be for. Others may, as some did then, pathologize me by pointing to the trauma responses I sometimes exhibit as if they somehow negate what triggered those responses in the first place. It would seem to me, that that is no better than what psychiatry does, which is to fail to investigate context and causes. The mad ought never to consider another member mad, and dismiss what they say. My statements here are not disloyalty to the movement…they are simply truth. The foundation cannot be built on disparities, and on behind-the-scenes picking and choosing which voices to heed , and which are dispensible. Examination of shadow must be there from the start…and its absence is the true mark of disloyalty to the movement.
I am glad to have met many of the peers that I did. I am grateful for many of them, and I am absolutely certain that there is vital and beautiful work being done in the peer community. I tried hard to be a part of it, too. But, as my former counselor Will Hall has so eloquently written about, there are problems there…and to deny them would be to spread the same type of wounding that many professionals do. Simply put, there are many unhealed people in the peer community…meaning unhealed in ways of which they are either not aware, or take no personal responsibility for (since none of us, including me, are ever all-okay). And there do not appear to be any checks and balances in place…where speaking out is truly made safe (hint: Ask the harmed person what they need), and where amends are attempted.
I understand that many of us cannot find, or access, other sources of support outside of the peer community…support we so desperately need and deserve. I also understand the degree to which outside helpers (of all kinds) can be unaffordable, inflexible, unhelpful, and downright damaging…and I would trust very few to hold space for me, either, at this point…and for good reason. I understand the desire for community, belonging, and friendship…as my foray into the peer community represented the first time I actively reached for these things in my physical world in decades. DECADES. The risks I took at the time, and the physical and emotional energy I expended, were unfathomable and unprecedented…making what I found there all the more tragic. But I’ve also noticed a tendency for peers to reject non-peer supports and input, regardless of its availability and accessibility, without exploring it or attempting to create a working partnership with those outside of the movement. It seems to have almost an ‘echo chamber’ effect… there is so much more that does not feel fully represented in the movement. And the ‘us’ versus ‘them’ mentality often taken against all professionals, while understandable, really serves no one…and just creates yet another version of the professionals’ refrain that “only we have the answer in how to meet suffering”. I could not find, to date, what I needed in the peer community, and I know that I tried my best. The community must be open to addressing its own shadow, and most certainly must not allow louder and more powerful members to dominate or harm others, and then excuse it with the explanation “but they are a survivor of such terrible traumas”…because what the hell do you think I am?
I’ve also noticed a tendency for certain types of peers to be more easily overlooked or excluded, whether intentional or not, from group events and leadership roles. These are individuals, like me, who are especially sensitive, neurodiverse, less extroverted, more vulnerable to trauma effects, and more physically and energetically limited…or especially, any combination of these things. There is a partial lack of awareness of accommodating the neurodiverse, the profoundly traumatized, and the physically disabled. It’s interesting to me that right now, during the Covid-19 crisis, many peers are turning to creating online supports…because some of us, myself included, have ‘unofficially’ been doing this for years. Very quietly and unexpectedly, my small Facebook page became a place where similar folk from all over the world felt safe, and heard…and many of us just happen to be survivors of heavy trauma, as well as highly sensitive, introverted, and neurodiverse. Some of us have physical disabilities. Many of us are underresourced, and isolated. Given my own limitations and needs, I cannot provide more than a small-scale safe place right now…but I’m so glad I can provide it…and I can feel the pulsating of life there, and how it radiates out into the broader world. Everyone matters. My friends are brilliant and beautiful, and not at all dispensable. Their voices are vital and needed, and I treasure each and every one. Our connection has allowed my own voice to emerge, just as I hope I nurture theirs. There is a goldmine of creativity and wisdom among the most unseen and unheard of psychiatric survivors, and it is the movement’s great loss not to learn how to tap into our gifts.
A last thing I’ve noticed is that in some spaces of the broader movement, including online (and particularly in those groups that include professionals and movement leaders), there exists a challenging of psychiatry and Pharma (which is much needed), and an abundance of discussion and research to demonstrate psychiatry’s harms (which is also much needed), but without simultaneously honoring and supporting the various survivors of psychiatry and Pharma, who are sharing the same group space in real time. This gives it the feel of an academic or self-centered pursuit, emotionally disconnected from those it is supposed to be for in the first place. Some of us are actively sought out to be followers and members (for example, of Facebook groups and personal pages), without the spaces at all feeling eye-level or mutually respectful…and while giving the impression that only one side can learn from the other. Caring about the ill effects of psychiatry also means caring for those affected by it…in real-time shared space…and in a way that does not feel patronizing or humoring. It means clearly seeing the potential leaders, helpers, and artists underneath any current distress or limitation a person may have, and providing attention and nurture, in order to expand both society, and movement ranks. We don’t always do this on a grand and public scale…sometimes it must be one person, and one kindness, at a time. This is also very much the work.
I have had my breath taken away by the number of times my voice has been overlooked because I was not ‘somebody’…when it was discovered that my ‘page’ was not a website or professional page, but simply a small personal page on Facebook…and when I wasn’t viewed as a writer because I am not published. I will forever be grateful for people online like Michael Cornwall and Alec Grant for valuing and seeing me, reading my posts, and treating me as an equal…just as I was. I thank Will Hall for (literally) signing me up for Facebook three and a half years ago. The movement misses countless opportunities to support and make way for people with more challenging circumstances, and more sensitive or traumatized neurobiology and physiology…and it’s a mistake. Truly, it doesn’t take much. I don’t mean formal mentorship here, although that could be beneficial, too. It’s really a practice of seeing others at eye-level, and having authentic hope and expectation for their lives…and non-patronizingly reflecting that in how you interact with them in real time. The fact that someone’s healing and emergence could take many years, even decades (as it is with me) should never, ever be an impediment to recognizing their value and their hope. Some healing is complex and multilayered, and takes a long time. Many of us are underresourced physically, financially, socially, emotionally, and energetically. There must be a willingness to hear the messages we bring back from where we have been. Hard as they may be to hear, our voices are necessary in understanding the full spectrum of people affected by psychiatry and Pharma. Every action or inaction matters in this game, because people are dying here. Sometimes the work must be local and simple…as this will radiate out into the world, too. It needn’t always be done from a grand public platform.
It’s time to look at the shadow and widen the lens, and hopefully not the time for my hard-won and heartfelt words to invite debate and defense…or an outright denial of my direct experiences. There is a quote from Stephen Covey that says “The biggest communication problem is we do not listen to understand. We listen to reply.” I hope you listen. It hope my words elicit either personal identification and a sense of validation, or elicit self-reflection and a deeper conversation. I will not take on any need that a movement leader or peer may have to otherize and dismiss me because my experiences represent uncomfortable realities for them. (I am also not interested in long intellectual analyses of my words, because I am not really coming from a ‘head’ place.) I have always been filled with more truth than most of the world can hold…and because it sometimes feels like more than I can hold alone, it is part of why I suffer. I have allowed the world’s critical response to my perceptions to diminish my voice. Those days are over. You can hurt me, but you will never silence me again. I have been guided here.
One characteristic I notice among my online friends is that many of us have served endlessly as scapegoats and black sheep, and have experienced narcissistic abuse, when seeing through shadow and perceiving inconvenient truths. This dynamic must be bought into the light, because it exists in every group, and it keeps vital truths hidden. It fuels the pain and abuses of the world…and it exists even in groups whose mission it is to alleviate the pain and abuses of the world. And so it is my greatest hope that this article, borne of my lifetime of lived experience, can help to bring this dynamic into the light. But perhaps more than anything, I hope that what I’ve shared here has helped some survivors (and professionals) feel more seen, and less alone. You are why I write. I walk with you.
A poem by Laura Gilpin, for all of us:
The Two-Headed Calf
Tomorrow when the farm boys find this
freak of nature, they will wrap his body
in newspaper and carry him to the museum.
But tonight he is alive and in the north
field with his mother. It is a perfect
summer evening: the moon rising over
the orchard, the wind in the grass. And
as he stares into the sky, there are
twice as many stars as usual.
This piece really spoke to and for me, thank you. The sad thing is, that I first began to follow MadinAmerica just over 5 years ago, at that point had managed a lifetime of chronic depression whilst avoiding psychiatry and the menal health system. Yet within a month of being here, I too was in hospital (in Ireland) and since then, have foiund myself not only trapped in that system, but having also taken the various drugs – have also lost my previous self. There is so much about that aspect that I read in your story. I was a sensitve and creative woman, a professional, well-read. It was only last year during an enforced period of being alone at home, that I woke up from my own “deep sleep”, and over the last year am questioning what the Hell happened to me, that I, a woman of now almost 50, believed the voices of people who I had always known were not helpful to me. You lost decades, I lost 5 years, this puts things into perspectives and gives me hope that I can pick my ife up again. I look forward to reading more of your story, hoping I can find your FB page. Best wishes to you, Claire.
I know that feeling of “what the hell happened?” For a long time I blamed myself, but I have spent the past year writing my story, which now seems to be a manuscript for a book… and it has made it very clear how so many things came together for some thing like this to happen. Most importantly, we cannot blame ourselves. I only stumbled across writings challenging psychiatry about five or six years ago. I’m 61. One of my biggest hopes is that when people read my story, that parts of their own stories will make sense to them, and they will have more compassion for themselves. I still struggle with it, but it was never our fault. NEVER.
I’m so glad that you are finding a way out!
Also, feel free to send a friend request. I use my real name on Facebook. I keep my number of friends small, so that it is a safe space to not be perfect. x