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Transcript
Good to be here again, and I appreciate being invited. I want to begin a talk on patient experiences of missed and misdiagnosis by first extending gratitude to physicians who, by their expertise, commitment, diligence, and tenacity, diagnose, treat, and follow up on patients everywhere to the best of their knowledge and ability. Thank you to those here and around the world. Something for all of us to remember: “Medicine is an imperfect science, an enterprise of constantly changing knowledge, uncertain information, fallible individuals, and, at the same time, lives on the line.” Atul Gawande, who is a surgeon, writer, and researcher.
My purpose today is to normalize and mutualize a wide range of emotional hardships that fall short of requiring clinical assessment and mental health treatment services. Emotional hardship during bumpy diagnostics is ecologically correct – meaning that, given the overall ecology and extent rocky road, struggle can be expected. Think of it in the most humane way possible. We are having normal reactions to abnormal circumstances. Working in trauma now for decades, this phrase is repeated over and over again. And I must say, when responding to mass casualty events on scene with people absolutely, very, very traumatized by an event, this phrase is something people will carry and hold.
The mental and emotional experience a patient in “leak land” – that’s my name for the global landscape, a patient in leak land might experience across missed and misdiagnosis – can at times be colored by neurobiologically based cognitive challenges associated with leaking. By starting here, I’m not marginalizing or diminishing any patient’s experience, including my own thoughts and feelings, but it’s important at the outset to say that leak land life can be accompanied by less than what we might ordinarily expect from ourselves in terms of effectively processing and communicating our experience.
I’ll just pause for a second to say that this presentation is informed both by years of clinical experience working in trauma and by my own leak experience. Said differently, as I often remarked to colleagues across my 14-month leak odyssey, just feel sometimes like I’m a taco short of a combination platter – something to which a psychiatrist colleague responded with active listening: “Yeah, kind of like your cheese is slipping off the biscuit.” A tad of humor – or even irreverence – sometimes can be helpful in the midst of all of this.
Alongside diminution in thinking and understanding can be a sense, particularly during missed and misdiagnosis, of wondering, “Who am I in terms of the identity that I’m used to?” If I’m someone in the world who gets things done and is used to productively charging forward with great agency, the stalling nature of diagnostic error, overlook, ambiguity, or absence – can leave us in unfamiliar territory. I don’t recognize, and I’m unfamiliar with this me. It’s possible to broadly organize patient experiences evoked along the diagnostic trail, and particularly by missed or misdiagnosis, into four categories of emotional response. Note that the uppercase and underlined first word serves as a sort of catchall for all of the descriptions that follow, and that patients may experience little, a great deal, or even none of these. So, this sort of categorization is intended – really, actually – I found it useful, as others have for years, because in these four, pretty much you can look down the list and find others that define the one that’s headed.
I first want to briefly share the chronology of my own experience and then contextualize it in these four, under these four umbrellas. For the first eight months after onset of my symptoms, my neurologist – a headache specialist – ordered all sorts of scans, none of which showed any signs of a leak, even as he was convinced that I was evidencing spontaneous intracranial hypotension. A second neurologist insisted, based on the absence of scan data, that there was no leak and, as proof, knuckle into my occipitals, which, upon my getting a second of relief – probably diverted by the pain – concluded affirmative, concluded proof positive that this was occipital neuralgia, and not a leak.
In month nine, a brain MRI pointed to a likely leak indicator, pachymeningeal enhancement, and I was referred for digital subtraction myelography, which showed two very significant CSF-venous-fistulas, T10-11 and T11-12, which were shortly thereafter surgically repaired. I woke the next morning after surgery with almost all of my life-dismantling symptoms dissipating rapidly.
Toggling back now across the four categories, I’d like to share some short personal anecdotes that go a bit beyond just the descriptive terms.
Mad: Yes, I had a lot of listed feelings along the often unpaved and bumpy diagnostic road, and I was aware at the time, or even more now in the rearview mirror, how mad I was. Why couldn’t the 70-year-old body that had served me so reliably for six decades show up in some way now that would contribute to a definitive diagnosis and subsequent liberation from leak hell? I recall so clearly how, with each excruciating, head-rattling COVID cough or sneeze, I would drop in tears to the floor and reliably mutter an expletive toward myself, not just for cathartic relief from pain but also for its betrayal in keeping secret what needed to be found and treated.
Sad: Yep, again to some of the listed feelings. Along the diagnostic path, waves of a low-level dysphoria. The daily toggle amid so many symptoms between hope of an answer today and absence of same – came with, at times, an iterative and compounding blanket of disappointment. I’ve always thought that depression could be defined as a lack of perceivable choices. Missed and misdiagnosis left me with a fleeting sense of choicelessness about my life and about tomorrow. A sort of suspended animation, and this sense of suspended animation is something that a number of my patients and colleagues relative to leaks have named.
Scared: Yep, to those listed, and for me, an abiding challenge to navigate the ambiguous and the unknown. As an academic, a therapist, and a researcher, I knew – and know – well how to hold and relate to uncertainty, but when it came to functional losses in my daily life and anticipated life going forward, not knowing assumed a granular and unsettling fear to which I wasn’t accustomed and to which I had to learn to live with or accommodate. My closest and reactivating reference point was loss of loved ones, associated grief, and my fear about what was to become of me in their absence.
Ashamed: Yes, and an insidious sense of personal agency or fault in creating what I was experiencing. Intellectually, I could easily retreat to the ridiculousness of blaming myself. But treating trauma – like treating psychological trauma for decades – I also recognized in me a dynamic which I and other trauma therapists have recognized in untold patients. The human psyche, with all its gifts and capacities, finds powerlessness and loss of control highly vexing. Amid missed and misdiagnosis, I felt zero control of my medical present or future. Characteristically, as I had seen so many times previously, a misguided salve for a pained sense of powerlessness came in the form of blaming myself. How? Why? Because at least in blaming me for diagnostic failure, I had some sense of power – some illusion of control, some modicum of imagined agency – in a circumstance, diagnostics, in which I actually felt none. Put simply, I occasionally felt diagnostic elusiveness was on me. Such thinking, circling back to a point made above, is also emblematic of how, with raging symptoms and attending cognitive challenges, I wasn’t at my capable thinking and formulating best.
Glad: Before proceeding, I want to add a fifth emotion that, while not earning categoric status in the hardship context of this talk, requires mention. Put simply, glad – from transitory peaks of hope spawned by speculative diagnosis all the way to the relief of a confirmed and accurate diagnosis. Glad can momentarily, or even durably for some, take center stage. This isn’t a Pollyanna-ish, “it’s all good” – just a recognition that glad can have its moments.
Two reasonable questions can be asked at this juncture: First, okay, here are some of the challenging feelings – now, how do I communicate this and to whom? And secondly, what are some of the personal and external resources I might in service of an improved quality of life access?
Let’s start with to whom I communicate and what, and I appreciate what those of you have addressed so far. Communicating with people who capably can hear what it is that we’re saying has the most importance. There’s a great Quaker quote that has relevance here: “The greatest gift one being can give another is to listen them into discovery.” Getting really listened to by a caring other can illuminate all sorts of possibilities for us in terms of our internal wisdom and accessing our own resources.
Finally, I’m going to skip – because time is running – to something that I and my clients from “leak land” have found beneficial. In the midst of diagnostic maelstroms, is asking a very simple question: Today, where and how can I offer myself even the tiniest bit of ease, mercy, or compassion, or kindness around my experience just as it is – even if it’s only for a split second? Perhaps parting the curtains and looking out at a blue sky or seeing a star – that little glimpse, that little wisp, can be a salve of sorts for the moment. To you, fielding missed or misdiagnosis, and to you along the trail of trials and repeated treatments, may conclusive determinations of leaks and successful interventions await you. And going forward, may rich internal and external resources be available and accessed in service of reduced suffering and an enhanced quality of life. Thank you.