Diagnosis Gatekeeping
by the Crisses
"Are you diagnosed by a professional?" "Do you really have DID?" "Are you self-diagnosed?"
We find these questions offensive. There's a lot of absolutely unnecessary gatekeeping and disempowerment around diagnosis in the community in general. Here are our arguments about why it's unnecessary — and wrong:
- the criteria for DID are actually quite straightforward
- not everyone has equal access to professionals, health coverage, or the amount of time (6-8 years) it takes to find a professional who can diagnose DID which is really bizarre given point 1. Thus people with privilege (white, middle class or above, working or still under parental insurance etc. i.e. adequate health coverage, or those qualifying for medicaid) get a dx far more often than people in the insurance gap between medicaid and adequate insurance coverage (IN THE US — there's other challenges outside the US that are equally as awful).
- A Harvard study shows that 90% of therapists have inadequate training and knowledge to diagnose or treat DID. Hence the 6-8 years in argument #1. They see what they want to see, leaving people with DID getting awful or inadequate attention/care for YEARS before we either find someone, or the therapist we're seeing finally wises up and considers a DID diagnosis.
The diagnosis gatekeeping question marginalizes and stigmatizes SO MANY PEOPLE in this 6-8 year or insurance gap. It white-washes and Americanizes the community.
1-3% of the world population has DID and is likely:
- dodging diagnosis for any reason (internal or external stigma, fear of their children being taken away, etc.)
- passing in society/functioning at the moment (working, raising a family…)
- in the huge gap of the 6-8 years
- not adequately insured
- unable or unwilling to seek mental health care for any reason (therapy abuse, etc.)
- potentially institutionalized or in jail or homeless
- is still living with abusers who may be deliberately blocking access to proper health care or diagnosis
We refuse to answer this question anymore. And we refuse to gatekeep based on it.
The question is irrelevant.
The diagnostic criteria are basically:
- Criteria A New: Are there many of you? (the criteria SPECIFICALLY allows for selves-disclosure, so the therapist/psychiatrist does not need the dog-and-pony show to check off Criteria A).
- Criteria B New: Do you have abnormal memory issues?
- Criteria C New: Is this causing you problems?
- Criteria D New: Is something else causing this? (brain damage, drugs, illness, etc.)
- Criteria E New: This can't be an acceptable/normal part of your religion or culture. (except maybe if it's C then maybe anyway....this might be a point where an expert would have to help make a determination.)
While we won't encourage anyone to self-diagnose, we can completely understand folk who want or need to self-diagnose — and we welcome them with open arms. The criteria are simple enough, the lack of access is very very real, and people need support whether or not they have a professional diagnosis.
The fact that 90% of therapists can't ask the simple questions needed to determine this — patently ridiculous. It's stigma and bias that stops the 90% from diagnosing it. It's in the bloody diagnostic manual, and the criteria are really relatively simple.
Criteria A is only a problem if there's zero coconsciousness and the person has no knowledge of others in their head. Many in this category are passing in singular society with occasional troubling odd events in their life that maybe they'll eventually seek therapy, but the therapist is unlikely to diagnose them unless someone else fronts.
The only time memory issues are difficult to check off the list is if you don't even remember having issues with your memory, thus maybe fleshing out an answer for criteria B requires more interview time. Also note that the new standards will make memory issues optional (ICD-11) and thus this is kinda a wishy-washy point right now regardless.
Criteria C should also be pretty clear for self-determination. Are you distressed or having trouble functioning because of the people in your head or the memory issues you have? Those who meet this criteria but don't know enough to acknowledge it won't likely self-diagnose anyway.
Thus we see no issue with selves-diagnosis if A B & C are clear and one is relatively sure the 2 exclusion criteria don't apply. Most therapists don't send someone with DID for an MRI of their brain to make sure that there's no structural issues that might cause the symptoms.
Also at least a suspicion of a diagnosis means you can seek out one of the 10% of therapists who recognize DID and are able to diagnose and treat it (this is "Trauma specialist" not "DID specialist") — assuming that the person is able to seek out therapy. Those who cannot need resources and support anyhow, though, and we won't push them away or further marginalize them or exclude them.
Instead, we'll refuse to answer the question at all, and stand amongst them.