On Learning to Diagnosis & Be Diagnosable
When I was 12, I developed an auto-immune condition that I later understood to be a reaction to the childhood emotional and sexual trauma I endured. I learned there was power in naming things. My parents worked hard to help me get a diagnosis for that rare condition though in the end there were two possible one’s that were allegedly treated the same way so I never know which to say I have. Generalized Subcutaneous Morphea or Eosinophilic fasciitis (EF).
It was a long road before I received a MSW degree in clinical social work. I was never excited or motivated by the power or responsibility involved in formulating a diagnosis for a client. As I reflect back on my coursework the significant role of diagnosis seems woefully missed in the core curriculum. How is that possible? Years later the word diagnosis feels much more important than a necessary code to grant access to medically necessary treatment. It was often said “you’ll get that experience in your 2nd field placement.”
After a whole lot of poorly assigned field placements and problematic supervisors combined with my trauma being triggered, I experienced a holiday miracle advocating effectively for a new placement, this time one I would find through my own relentless networking. I received a cryptic voice message I’ll never forget, “Hi this is Rudy, Supervisor at Mass Mental Health Center. If you want to work with chronically suicidal patients, call me back.” It was an amazing opportunity for numerous reasons but the main takeaway in terms of my desire and interest to learn about diagnosis was to be very cynical and discerning about it. The obvious stark gender and racial disparities represented in the patient populations that comprised the DBT program versus the CBT program were glaring from Day 1. Yet my supervisor wasn’t keen on talking about diagnosis with me as all of the patients we worked with were referred to our ~6 month intensive outpatient program with 5+ diagnosis’. So he asked me, “What does it even mean” to be labeled with co-occuring and sometimes controversial labels? He was far more interested in helping our clients improve their lives by developing skills and relationships with the staff and inevitably with the others in the milieu.
Sometimes I joke that in graduate school in the 1st year you’re allowed to talk about your friends or family but in the final semester there’s more personal self disclosure related to the training we were pursuing. For most of us the vocation is deeply personal! Still, stigma in the field is very real. At times I could only bravely use Instagram hashtags to “come out" when exploring and integrating my ever-changing self conceptualization. There’s even a term to capture the phenomenon of students self-diagnosing.
Some will ask why focus on diagnosis. When I hear these well-intentioned questions from loved ones I can often feel the stigma of having a mental illness. Even writing the word now feels difficult to claim. If one believes that recovery is possible, that treatment works, that diagnosis is a means of accessing effective treatments then getting a correct diagnosis may be life-affirming, life-saving. In these moments of being a “believer” diagnosis makes change possible, survival possible. I imagine some of these loved ones know very little about mental illness, let alone CPTSD and personality disorder treatment. Instead they know and love me a person who has been trying so hard for so many years to access treatment, always “searching for the cure.” I suppose it makes sense that it could be self-protective, a defense against hope compared to the recent new discoveries and insights I’m having about the complexity of diagnosis. I understand if they feel hopeless but wish they would partner with me in learning and helping me stay critical.
The long road continues as I am tasked with holding a critical lens about how flawed diagnosis can be. It has been used as a weapon, against tool to segregate, to dehumanize, to justify, to institutionalize, for forced sterilization, for irrevocable harm. Diagnosis can feel confusing and conflating when there is significant variability in how any individual is impacted by the same clusters of symptoms. A recent clinician emphasized the role of personal responsibility in recovery and a bit baffled I asked if folks living with PTSD are all in a victim mentality then given the high prevalence of early/developmental trauma/repeated/chronic trauma for folks with personality related difficulties.
As challenging as it has been to work in the field while also seeking my own treatment, I am grateful for resources like Mclean’s Deconstructing Stigma, NAMI, Gould Farm, Project Let’s, Icarus Project, etc. that my detours through the system and field have exposed me to.