Dear ISSTD community,
It was a great pleasure to connect with so many of you at the annual conference in Louisville, Kentucky. While most of us have become accustomed to increasingly technology-mediated lives, with so many professional activities pivoting online during the pandemic, the chance to come together as a professional society and community is a precious one, particularly given the kind of work that we do.
The lead-up to the conference coincided with expressions of concern on social media regarding a workshop at the ISSTD virtual conference in November 2022, which was focused on self-diagnosis of DID based on social media information. These concerns were linked to a recent presentation on the topic at McLean Hospital that was posted on YouTube.
Some people living with trauma and dissociation are worried that the ISSTD has challenged the diagnosis of specific social media users with DID, that the ISSTD is denying that self-diagnosis is possible, or that we are arguing that people with “real” DID will naturally be ashamed and hide their condition. I want to address those concerns now.
Social media has rapidly transformed access to information about mental health and DID in particular. On platforms such as TikTok, videos about DID are attracting literally billions of views. Some social media users with DID have over one million followers and subscribers. Their content is very influential across a diverse audience that includes people living with trauma, dissociation and other conditions, as well as the general public.
As DID receives unprecedented attention on social media, ISSTD members across the globe are describing a new phenomenon. Some people are presenting in therapy having already diagnosed themselves with DID, based on information they’ve received on social media. They may already have mapped out their system of alters or self-states.
And while believing that they have DID, some of these clients do not meet the criteria for DID. They may have other experiences of trauma and dissociation, they may have other diagnosable and treatable conditions, or they may be experiencing distress for non-clinical reasons.
This is a sensitive but important conversation for the ISSTD. Everyone has a right to respect and understanding in health care settings. People living with trauma and dissociation have struggled to have their needs addressed within a mental health system that denies the prevalence of, even the existence of, DID. Self-advocacy and persistence are critical survival strategies for people with DID.
At the same time, accurate diagnosis is necessary for an effective treatment plan and ensures the health and safety of clients. Specialists in dissociative disorders are not the only group of clinicians who are experiencing an influx of clients who have self-diagnosed based on social media information. Professional literature in other specialist fields, such as tic disorders, are describing young people who have self-diagnosed based on social media information, and who have been unnecessarily medicated and experienced prolonged suffering while their underlying needs have gone unmet.
The conclusion of the ISSTD workshop was that clients who self-diagnose with DID based on social media information are a diverse group, and they should be provided with individualised, tailored care based on careful assessment just like any other client group. The workshop did not challenge the validity of any person’s diagnosis and it did not deny the possibility of accurate self-diagnosis. And contrary to some claims on social media, the ISSTD has never, and would never, promote the belief that people with “real” DID should be ashamed or hide their diagnosis.
I appreciate that these are nuanced conversations that need to be handled thoughtfully and carefully. Our workshop in November was just the start of this discussion. The increased visibility of people with DID on social media is breaking down barriers, and helping the community grasp the realities of living with dissociation in powerful way. As a Society, we need to understand how social media is shaping the experience and understanding of dissociation and informing how new clients present for treatment.
The new ISSTD strategic plan includes a commitment to working with lived experience organisations to co-design an engagement framework. We already have a number of important lived experience partnerships in which people with DID, and the organisations that represent them, provide input into our resources and participate in ISSTD events. We look forward to expanding and deepening these partnerships.