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The A-Z Blogging Challenge - D for Diagnosis

By Mia and Berlou

We thought we’d write about dissociation for ‘D’, but as we’ve come to do it we changed our minds and will be writing about diagnoses and DID. Since starting, others have wanted to be writing about death and dogs too... we're kind of sorry we can’t do it all! 

Within this post, we consider the complexities of a dissociative identity disorder diagnosis. We talk a bit about our own experiences with diagnoses, the diagnostic criteria, and explore the reasons systems might choose to seek, or not seek, a diagnosis.

Getting the DID Dx

Whether or not to get diagnosed with DID is dependent on personal choice, circumstances, and availability - it’s not easy given the amount of misinformation out there about dissociative disorders, even among the medical community. Misdiagnosis is rife within our community, and systems often collect several other diagnoses en route to their DID diagnosis.

For us, we wanted the diagnosis for the validation, and because once we started finding each other it became evident we would be being very open about our experiences - and we wanted to be able to say “we have DID”, not “we think we have DID”. We were also extremely pissed off by our first (very incorrect) diagnosis, and that gave us a lot of motivation to fight for an accurate one.

The process of getting a DID diagnosis took almost two years from when we first went to our doctor and told them we had DID and needed help, or ten years from when Amber first went to the doctor because of our mental health. We would never have even gotten close to a psychiatrist for evaluation if we hadn’t realised our DID ourselves though. 

Our comprehensive diagnosis story can be read here. The short version is basically that we had to fight a lot, we were lucky we started seeing a mental health nurse who supported us and advocated for us in the process. We were first assessed over the phone by a Psychiatrist who insisted DID was too rare for us to have - but he’d (apparently) worked with thousands of dissociative patients! 

He diagnosed us with Mixed Dissociative (Conversion) Disorder, traits of MPD, and a load of personality disorders. We think the Conversion disorder part was because we explained how somatic our experiences can be, but who knows, we think he just didn’t like that we knew we had DID (how dare we!)

We had to fight for a second opinion and eventually got one, this assessment was in person and not as bad as the first, but still not good. For this one, I (Mia) took my ‘evidence’ - a pile of poetry books and the manuscript for The revelation, lol - which surprised them. 

That psychiatrist diagnosed DID or P-DID - partial DID, when there is one dominant identity (this diagnosis is in the ICB-11, which is used in Europe). Before our system reveal we may have fit more into the box of P-DID, but since then there are loads of us around, and that doesn’t make sense for us, we have DID. 

DID diagnostic criteria 

The diagnostic criteria for DID are outlined in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). This is a brief overview of the criteria:

  1. Disruption of identity - the presence of two or more distinct identities, each with its own way of perceiving and interacting with the world. 

  2. Amnesia - recurrent gaps in recall of everyday events, important personal information, or traumatic events, beyond ordinary forgetfulness, which cannot be explained by ordinary forgetfulness and are not attributable to the direct effects of a substance or a neurological/medical condition.

  3. Significant distress or impairment - symptoms of DID cause clinically significant distress or impairment in social, occupational, or other important areas of functioning.

  4. Not a normal part of cultural/religious practices - symptoms cannot be better explained by cultural or religious practices, or by other medical or psychiatric conditions.

The diagnosis of DID is controversial and complex, and each individual's symptoms and history needs to be evaluated to determine whether they meet the criteria for the disorder. Other mental health conditions, such as post-traumatic stress disorder (PTSD), depression and anxiety, personality or other psychiatric disorders, or neurodivergencies, are often present, which may complicate the diagnostic process. 

We can also have amnesia about amnesia - for us our amnesia is sneaky and we don’t notice it, but it’s there and it impacts our daily life. People can also suffer more from emotional amnesia than episodic amnesia. This can further complicate the assessment and diagnostic process - how do we know what we can't remember? 

Cultural considerations and intersectionality - it's important to acknowledge the cultural and societal factors that may influence the experience and diagnosis of DID. Cultural beliefs about mental health, language barriers, and cultural stigma surrounding trauma and dissociation can all impact how DID is understood and diagnosed within different countries and communities.

Considering how factors such as race, gender identity, sexual orientation, disability status, and socioeconomic status intersect with the experience and diagnosis of DID is crucial. Culturally competent and inclusive approaches to assessment and diagnosis are essential to ensure that individuals from diverse backgrounds receive appropriate and effective care.

Diagnosis, or not?

The decision to seek or avoid a diagnosis and the reasons for either are unique to each system - there is no right or wrong way to do DID, and a diagnosis does not make a system more valid than a system without a diagnosis. 

It is entirely personal choice, and the decision to pursue a diagnosis should be made based on what feels right for the individual system, taking into account their personal circumstances, beliefs, values, and whether or not a diagnosis is available to them.

Reasons for seeking a diagnosis include:

  1. Validation - having someone confirm DID formally can help confirm our experiences are real (but this changes nothing - we have DID/are plural without external confirmation).

  2. Accessing treatment - a diagnosis can be the first step towards specialist therapy to support symptom management and healing. Without a diagnosis, many systems are at risk of being misdiagnosed and receiving inappropriate treatment. 

  3. Understanding and healing - once we have the Dx, many of us feel more sure of ourselves, and can start exploring our other selves and trauma, and working on integration and healing. With DID, doubt and denial go hand in hand, our entire system needs to accept this as our reality and start working together, if some of us are still in denial this can hinder progress.

  4. Social support and benefits - a diagnosis might be necessary to access disability benefits, accommodations in education or the workplace, or legal protections. 

  5. Reducing shame and self-blame - with DID we can experience confusion and shame about our symptoms and experiences, a diagnosis can help alleviate some of these feelings by providing explanations and reasons for current and past behaviours, and help us connect with others who have similar experiences. 

  6. Clarifying symptoms - people with DID often have other co-morbid disorders or neurodivergencies (BPD is common, as well as autism, ADHD, bipolar disorder, there are many more), a diagnosis can help people start to pick these apart, get better treatment, and understand themselves better.

  7. Improving relationships - DID impacts all of our relationships, whether our systems are covert or overt, and a diagnosis can help both the person with DID and their friends and loved ones understand the challenges they face and support them appropriately.

  8. Self-advocacy and educational purposes - sometimes we can feel better equipped to advocate for ourselves within the mental health system when we have a diagnosis, and some systems are actively trying to raise awareness and help others, a diagnosis may make this easier as we try to reduce stigma and improve understanding.

There are also many valid reasons a collective might choose not to seek a diagnosis…


  1. It’s not accessible - a diagnosis is not always available and can depend on the mental health care system where people live. There may be options for seeking a private diagnosis, which might rely on personal finances.

  2. Discrimination and stigma - there’s still a lot of stigma around a lot of mental health conditions, unfortunately, DID is one of the most poorly understood and stigmatised, and it’s no wonder many choose to stay covert even after finding their system and starting to work together. With a label of DID, we may be on the receiving end of judgment, discrimination and be misunderstood with this diagnosis - personally, professionally, and socially.

  3. Concerns about treatment - treatment for DID can be intensive and may involve revisiting traumatic memories, engaging in therapy for an extended period, and making significant lifestyle changes. Some people may be hesitant to pursue a diagnosis because they worry about the demands and potential side effects of treatment.

  4. Self-reliance - people may prefer to manage their symptoms and healing journey themselves without professional intervention. They might have their own coping strategies and support systems that work for them and they may prefer to maintain autonomy over their mental health journey.

  5. Cultural/religious beliefs - these may influence someone's perception of mental health and their need to seek a diagnosis. Mental health conditions can be highly stigmatized or viewed as a sign of weakness, leading people to avoid acknowledging or addressing their symptoms.

  6. Fear of internal exploration - a diagnosis of DID can lead to the exploration of and acknowledgment of other dissociated identities and trauma, which can be an emotionally challenging and daunting process. Some people may feel scared or overwhelmed and might choose to avoid delving into this.

  7. Fear of rejection - systems may fear that disclosing a diagnosis of DID could lead to rejection or abandonment by loved ones, friends, or partners who might not understand or accept their condition.

  8. Identity and self-image: accepting a diagnosis of DID can challenge our sense of identity. Some systems may struggle with feelings of disbelief, denial, or confusion about their experiences and may resist labeling themselves with a mental health condition.

Reflections on DID and diagnosis

The decision to seek a diagnosis of DID is personal and complex and can be influenced by individual experiences, beliefs, and available resources. For some, a diagnosis offers validation, access to treatment, and opportunities for understanding and healing. However, for others, concerns about stigma, discrimination, or the challenges of treatment may lead them to choose not to pursue a diagnosis.

We wanted the diagnosis for a few reasons, but getting it was incredibly hard and we had to advocate for ourselves numerous times, it took a lot of time and effort, and we know that it’s only because of privilege that we got the diagnosis and are now in specialist therapy.

Every system's journey is unique, and there is no one-size-fits-all approach to living with DID. What matters most is finding a path that feels right for the individual system, whether that involves seeking professional support, or relying on personal coping strategies and navigating the complexities of living with DID in their own way.

Ultimately, whether diagnosed or undiagnosed, individuals with DID are deserving of compassionate understanding and support as they navigate their journey towards healing and selves-discovery.

~ Mia and Berlou


Apr 11

What an articulate exposition of everything around diagnosis...

Replying to

Thank you!

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