Grieving Life Before OCD: Diagnosis and Treatment

How OCD treatment changes your view of the past

by Daniel Frazer LCSW

It’s not uncommon for it to take many years to receive an OCD diagnosis. In fact, most research shows that on average it takes seven or more years to receive the correct diagnosis (Perris et al. 2023). In that time, there will likely be a mix of either treatment avoidance, wrong diagnosis, thus, wrong treatment, unnecessary or poorly targeted psychotropic medications and, most important of all, a worsened quality of life. Further, the most common tools used to assess mental health status in health care settings, the PHQ-9 and GAD-7, too, will more often than not fail to alert a provider to possible OCD. Due to the multi-variable presentation of OCD it is also common for many mental health care professionals to feel unable or unqualified to diagnose OCD. As a society, we handle OCD quite poorly. I’ve become one of those people who corrects others when they use OCD as a synonym for quirky and organized. More grimly, it is common to hear of the rejection and ridicule those with health and somatically focused OCD experience in healthcare spaces. My clients with these presentations of OCD have been “banned” from hospitals, ridiculed by doctors and have had medical equipment and medication withheld from them with the perception they “just” have hypochondria — a now outdated name for what is termed illness anxiety disorder – a cousin to, but distinct, from health and somatic focused OCD. Unfortunately, these are just some of the many examples of the often distinctly traumatic situations faced by those prior to OCD diagnosis and treatment. This cascading anti-effort lengthens the period of time before one receives diagnosis and treatment, but what happens once someone actually does access OCD-informed care? Conventional thought would assume that eventual diagnosis brings immediate relief. Finally, after all these years, the many distressing, often bizarre thoughts and behaviors have some explanation. And while an isolated experience of relief is true for some clients I’ve worked with, there’s more often a palpable grief. I assumed, before being diagnosed with OCD, that I was either just very depressed, too sensitive or that I “just” had panic attacks. And while those issues may have been true too, OCD was at the core of the issue, as it is for most with OCD who have co-occurring diagnoses such as depression or panic attacks. This change in self-identity has many components – it is not uncommon for individuals with OCD to feel profound embarrassment and shame at the life they’ve had prior to OCD diagnosis. This retroactive reprocessing of life experiences is not unique to OCD, but interestingly, most shared with trauma disorders and even psychosis. OCD, trauma, and psychosis treatment all present a veil lifting experience for the individual. While most individuals with depression or generalized anxiety can reasonably assess their own conditions, OCD among other disorders represents the need to cross the threshold to obtain new parts of one’s identity. My own threshold crossing came after fifteen years. As many of my clients, the parts I see as OCD have indelibly bled into personality, into my values and my interests. There’s a sort of irony to how what once lay out of sight from my awareness is now the thing I willingly and gladly sit with, daily. Like how, when in grief, we feel a part of us is missing that was connected to a lost loved one, I ask myself who I’d be without the disorder I’ve lived with since I was at least 10 years old. Finding an essential synthesis to personal meaning has come from making new meaning of my OCD, grieving, and putting my efforts into being an OCD specialist clinician and researcher. Grief comes in many forms. Most familiar as a culture is of course the grief experienced with the loss of a loved one. However, the grief one feels for their life before OCD diagnosis is unique. While the individual with OCD may be relieved, many evaluate their most poignant memories, their moments of greatest urgency with the understanding that their thinking has been persistently flawed and is keeping them from feeling truly in the moment. The individual with OCD has been robbed of the gift of a consciousness not tethered helplessly to itself. The grieving of the earlier life after OCD diagnosis and treatment involves the willingness to admit that time has not been lost but that it needs new meaning. When working with OCD, allowing the individual to actively grieve is paramount to their recovery – something too often missed in the treatment of OCD and especially in the mega venture capitalist conglomerates that focus on OCD treatment. Grieving is generally not particularly economical – and this element, like most societal values, trickles into the therapy room. Interestingly, OCD treatment continues to swing in extremes – with those who feel exposure therapy is “cruel” and those who believe the only space that we have for OCD treatment is a sort of conveyor belt and machine approach to exposure therapy, devoid of the nuanced grey that good OCD therapy actually needs. Good therapy for OCD intricately weaves the inverted value systems of OCD with the herculean effort that exposure therapy requires. It also challenges the thought systems and points out the processing errors that happen when we make decisions with a metaphorical gun to our back. Good OCD therapy allows the individual to grieve their past life where they may have only known joy in brief glimmers. It allows them to feel very angry, very sad and very accomplished.

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This essay reflects a psychotherapy-informed perspective on obsessive-compulsive disorder (OCD), identity change, grief after diagnosis, and the psychological impact of delayed or misdiagnosis. It draws on clinical work with adults navigating OCD, anxiety, shame, and meaning-making following diagnosis.

This work is informed by contemporary OCD-focused psychotherapy supporting adults seeking care in New York City and Portland, Maine, with particular attention to the emotional, identity-based, and grief-related aspects of recovery that are often overlooked in standardized treatment models.