The long road to DID diagnosis - Vanessa's Story

04/03/2022

51 year old Vanessa had a “long road” to reach her diagnosis of Dissociative Identity Disorder (DID), but is passionate about guiding others who suspect they have DID to seek advice.

I am really keen to raise awareness for Dissociative Identity Disorder (DID) a diagnosis I received at the beginning of the first lockdown in 2020. For me, this was only possible privately despite requesting for a formal assessment and diagnosis under the NHS.

From my own research I read that DID is often misdiagnosed… this is what sparked off my intrigue as to why I could never reach a place of recovery (i.e. from anorexia, bulimia, both prolific in other self-destructive behaviours and repeated overdoses). I went on to read in research that the right diagnosis was essential for a suitable and effective therapeutic intervention and positive outcome.

For those with DID and other dissociative disorders, the likelihood of a misdiagnosis is high. When dealing with DID, misdiagnosis leads to years of improper treatment and little or no symptom reduction. For some, symptoms may get worse. There is also continuing debate over the validity of DID. It is a common misconception that DID is rare. Some professionals may not recognise DID as real and therefore, do not diagnose it. Then there are those who believe DID exists, but only in the exaggerated way that DID is often portrayed in the media. Both beliefs can contribute to a delay in getting the right diagnosis.

  • It is not uncommon for people with DID to receive several diagnoses before finally being diagnosed.

Part of the difficulty in properly diagnosing DID is the similarity of DID symptoms with other mental health disorders. Those with DID can show signs of anxiety, depression, substance abuse, personality disorder, eating disorders and/or mood disorders. Therefore, it is not uncommon for people with DID to receive several diagnoses before finally being diagnosed with DID. I spent 27 years in the mental health system and received different diagnoses (e.g. Borderline Personality Disorder) and inappropriate therapeutic interventions before being diagnosed with DID.

From reading various reports, DID is suggested to affect between 1% - 2% of the population. Despite this, DID and dissociative disorders, in general, continue to be the least explained and the most misunderstood of all psychological disorders within the NHS social and care sector. It appears that little or no thorough education is provided to those studying to become health professionals. I firmly believe this needs highlighting and has to change especially for those aiming to work within the mental health sector.

  • Fighting for what you want and need may feel totally alien, lonely and scary.

I have found several avenues that have helped me get to where I am today with a correct diagnosis and finally an appropriate treatment approach for DID. The road is a long one and you need to persevere and fight for what you want and need. This is a massive ask for those affected by trauma due to learnt core beliefs that they are inherently wrong, bad, undeserving, unworthy etc. Fighting for what you want and need may feel totally alien, lonely and scary.

From my own experience it is essential you advocate for yourself especially if you believe your diagnosis is wrong. Attempts to get a diagnosis under the NHS may come to nothing. This does not mean you do not matter; this does not mean you are wrong. This is due to lack of awareness and acceptance of DID.

  • There is a wealth of information from experts in the field of trauma and dissociation who will help you make those steps towards getting a diagnosis.

If you suspect that you have a dissociative disorder, find a charity or professional who has experience working with trauma and dissociation. Find an advocate, use any charities pertinent to your symptoms that really help keep the hope you hold alive. There is a wealth of information from experts in the field of trauma and dissociation who will help you make those steps towards getting a diagnosis.

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