The telling of personal stories is the most common way in which people with lived experience (PWLE) of mental health challenges are involved by mental health service providers (MHP) in training and education. While these opportunities can be validating and affirming, they can also have pitfalls. Our stories, and particularly answering questions about them, can require sometimes unexpected emotional labour. Another pitfall is that a single personal story can’t begin to capture the diversity of PWLE, and sensitivity to that diversity is one of the key lessons MHPs need to integrate into their practice.
Why tell our stories?
Telling our stories publicly can be important despite pitfalls. Each story’s lessons are useful, openness about our experiences usually fights stigma, and the freedom to talk about our experiences on our terms, outside of the framework of an assessment, can be empowering. I will eventually share my story in detail on this site [the first thirty years are now here]. Right now I want to briefly share some elements of my history in order to acknowledge the ways in which my experiences of mental illness and treatment have been privileged. Doing so is a reminder to me, and those who may wish to focus on my story, of all the perspectives that are omitted if I centre my story in service provider education. When I work with MHPs I strive to discuss the range of sometimes conflicting perspectives that arise out of the vast variety of experiences of mental unwellness and treatment, not just my own. Also important, because of my privilege, I may fail at this effort, and I appreciate being corrected.
My history, briefly
Over more than thirty years I have coped relatively well with serious diagnoses that started with schizophrenia and have included almost every stop on the bipolar spectrum plus ADHD. Bipolar 1 and adult ADD (without the ‘hyper’) are the two diagnoses that I think usefully relate to my experiences. I don’t seem to fit the profile some doctors have in mind when they think of someone living with bipolar 1 for over thirty years. That’s why I’ve had other mood-related diagnoses. Adult ADD is a condition that for me presents significant challenges when I am working alone on mundane tasks, like folding laundry (my sofa right now is not pretty). A diagnosis of ADD, which I did not consider much less receive until my late thirties, has helped me to find some effective coping strategies. Unfortunately, it has also made me hesitant to return to university despite having been fairly academically successful. Studying in traditional ways has always been very challenging. Knowing why hasn’t yet helped me overcome that challenge. Thankfully, most of my challenges with attention resolve when I am with others, a trait not uncommon for adults with ADHD.
Diagnosis as a thing
Psychiatry often leaves a large and sometimes traumatic footprint on vulnerable lives. A diagnosis and its consequences are no small part of what needs to be coped with by people who receive psychiatric care, not just whatever actual condition or state of mind is being labelled. Most diagnoses carry a stigma, some much more than others. Things are even more consequential when the diagnosis really doesn’t fit the circumstances, or the individual completely recovers but is stuck with a diagnosis that is seen by medicine to be “for life”. There are also valid critiques of the entire construct of diagnosis (and psychiatry). For these reasons, I usually talk about “living with a diagnosis of …” not just the condition itself. Thankfully, for me, except when I have been misdiagnosed, diagnoses have been helpful.
A privileged experience of madness
Most of my privilege in madness is a function of luck. One exception is that when I returned to Jamaica at 18, after my first and only psychotic episode, my mother affirmed what had happened to me as nothing to be ashamed of. There is a long history of madness on my mother’s side of the family. Her experiences with the shame and secrecy surrounding my grandmother’s illness led my mother to take the opposite approach with me. I have never felt stigmatized by my immediate family and have never struggled with shame around my experiences. That is a tremendous privilege for which I thank my mother and grandmother.
Other sources of privilege: on the whole, with a few glaring exceptions, my care has been competent, if not outstanding. When it has not I’ve been able to escape or ignore the circumstances. One early exception was diagnosis with schizophrenia and a year of aggressive mistreatment with powerful neuroleptic drugs. That experience was awful but gave me the confidence and determination to take assertive control of my medication and care. I am fortunate to have not suffered irreversible adverse effects from medication or withdrawal though I’ve taken over two dozen psychotropic drugs.
I have also, again through both good fortune and my mother’s intervention, avoided some of the most harmful experiences commonly coincident with serious mental illness: encounters with the police, involuntary admission and treatment, inpatient care, and restraint. All of these experiences are traumatizing. Even the best experience of inpatient care will often leave a scar because of the stigma around admission to a psychiatric ward. All of these experiences have the potential to pull people deeper into mental ill-health. Never having had them is the essence of my privileged history of madness. There are also many symptoms that, so far, I have hardly, or not at all had to cope with, most significantly hallucinations or voice-hearing which can at best complicate our grasp of reality, or at worst create real danger. Even full-blown mania is a state I have only been through twice with a span of thirty uneventful years between each occurrence. In neither case did I befall nor cause any harm (though my life was certainly disrupted). There was also very little of what some people call dysphoric mania. Although it may have seemed like all kinds of things to others, my memories of what I went through mostly amount to some form of bliss.
I don’t want to suggest that my journey has been easy. I’ve known extended periods of profound anhedonic and avolitional depression, including suicidality. Medicine’s ability to help at those times has been limited. Thankfully I have never taken action, but I have spent months in bed. And when I struck out and started my first business I did not understand the impact that working alone would have on my ability to focus and my mood. That, in turn, has hugely affected my income, and my engagement with life, significant consequences that are directly and iteratively related to my mental health. Thankfully I now understand the importance of the right work and a sense of purpose to my mental health and am acting accordingly.
Why talk about ‘Madness’
Madness is a word I use because it is not clinical and situates my experiences in a rich, broad, community of people with diverse, unusual psychological experiences and history. This includes, specifically, for me, insanity. I am thankful for having spent a few days in full-blown psychosis but can afford to feel that way because it has only happened once, briefly, and I no longer have a significant fear of it happening again. Psychosis has taught me just how much the “normal” world takes for granted, and that there are realms of consciousness beyond our common understanding.
Why talk so much about privilege?
I have observed a tendency in my Service User Education involvement to elevate more traumatizing and extended illness and treatment. There can be disturbing motivations in that tendency, including a desire to share stories that elicit strong emotional responses, that can look like voyeurism. There can be significant emotional labour involved in sharing our stories in an educational context. I try to share the perspectives and learnings I have gained from listening to other people’s stories (with care not to disclose what is not mine to disclose), but the emotional labour is not the same. An ability to engage with providers while not having to engage in overwhelming emotional labour is one way in which privilege can be helpful and protective in service user education work.
The other reason to talk about privilege is that privilege always comes with blindspots and failures of understanding. I try to educate myself and learn from other service users but I have made and will make mistakes, and I am committed to accepting feedback in order to grow.
Lastly with privilege often comes power and strength. I hope to use mine to support others so that a wide range of lessons, drawn from our treatment and recovery, can be shared.