Mental Health Awareness Week 2020
As you may be aware, it is Mental health Awareness Week 2020 (MHAW). This year the theme is kindness however this is an opportune time to give a someone a voice. This voice attempts to share a story which may in fact demonstrate what happens to an individual when starved of kindness from a very young age. Kindness is an essential ingredient of care a person receives at any age. Kindness is good for our health. One might suggest there is little acceptance or kindness shown towards some diagnoses. A problem with a lack of awareness is this may contribute to assumptions that some diagnoses are rare.
This introduces a trauma related disorder called Dissociative Identity Disorder (DID) (formally known as Multiple Personality Disorder). Vanessa received this diagnosis recently along with a less severe trauma related disorder called Complex Post Traumatic Stress Disorder (cPTSD). The focus of this will address the former one, as there is considerable disregard for this problem within the NHS. Future accounts will look at DID in more detail, as well as cPTSD.
It has taken over two and a half decades to be accurately diagnosed. Therefore this 48 year old’s voice is full of trepidation. Extracting sense and putting words down in order on paper requires a large amount of time and concentration. Because of the disbelief surrounding this “disorder”, a level of risk is involved as well. I am keen to share a brief introduction to her story with you. A lived experience within the UK mental health system 1993 – 2020 might suggest Vanessa is a specialist. In many respects I suppose she is, but purely from ‘service users’ prospective. Unfortunately, the problems she really suffered with had never been recognised, screened for, or diagnosed. As a result every treatment approach (although intended to help) resulted in a poor long term outcomes. This gives her some understanding for why she never really felt heard, understood and has remained unable to “recover”. Her incapacity to hold any sense of herself, or to recognise her needs in order to look after herself have remained unattainable.
An incorrect diagnosis …
The predominant diagnosis originally given, was for Emotionally Unstable Personality Disorder (EUPD) (previously known as Borderline Personality Disorder or BPD), together with disordered eating. The latter, an issue for 37 years, is currently being challenged. Vanessa is actively persuading long term positive behavioural changes to improve a malnourished status. BPD is documented to be a disorder in patients psychiatrists loath (Lewis & Appleby 1988). This was Vanessa’s overall experience, especially during lengthy hospital admissions. These were frightening, and excruciatingly lonely experiences. She had no idea her years growing up hidden within a toxic environment were being replayed thus perpetuating numerous, well entrenched beliefs. A time waster, a manipulative individual, an attention seeker and untreatable are among the charming attributes she was provided with. Sadly for Vanessa, as well as many other adults survivors, little has changed in over two and a half decades. There ares still no National Institute of Clinical Excellence (NICE) guidelines provided for DID. How atrocious and sad this is for anyone who began life marinated within, and unable to escape from, a toxic home environment. One that significantly predisposed her to develop the most severe of all trauma/dissociative disorders.
… and treatment
Unbeknown to Vanessa, BPD did not reflect her reality until small, yet stark, realisations began to creep in approximately five years ago. BPD did not capture the profound developmental disturbances Vanessa experienced, nor the traumatic origins of symptoms. For over two and a half decades Vanessa was trapped in a wretched ‘revolving door’, being admitted onto (sometimes sectioned under the Mental Health Act), and discharged from, psychiatric wards and general hospitals innumerable times. This became her specialist occupation and all she was known for. Sadly her copious medical notes portray an individual whose primary goal was to self destruct. She had been resuscitated in 1993, was transferred to Kings College London Liver Unit in 1995 and very nearly met her demise whilst hooked to a life support machine in the Royal Devon & Exeter at the beginning of 2001. These are examples when prolific overdosing left Vanessa fighting for her life. Alarmingly these instances had zero impact on her reducing this impulsivity. Familiarity tends to be experienced as safer, even when this is predictable source of pain results.
If Mental Health Services in every Trust were only open to a discussion about Dissociative Disorders, and, the training opportunities available (e.g. at Positive Outcomes for Dissociative Disorders). In Vanessa’s case, the majority of the treatment provided was unhelpful in the long term. An approach that incorporates heavy use of medication (old style medications in her early years effectively sedated her), electroconvulsive treatment, and force feeding, reinforced a dissociative state.
Why is DID difficult to diagnosis?
There is evidence of individuals given the label of conditions such as BPD, when, truth be told, a dissociative disorder is at play (Korzekwa et al, 2009). Vanessa has been shocked by the lack of awareness for dissociative disorders within the NHS. The difficulties in diagnosing DID are directly linked insufficient education health professionals receive. Surprisingly for those who have any understanding for DID base that on a 1976 film “Sybil” In this separate identities were presented in a overelaborated and dramatic way for the film industry. A similar film, “Split”, that came to our television screens a few years ago. Neither presented DID realistically. For example, Vanessa’s friends are unlikely to be aware of her different identities or “parts” as she is well rehearsed in concealing symptom, not being believed and a fear of being rejected, for example. There is a lot more to write about DID, however for now lets just say she experiences herself as having separate alternate parts that have different ages, hold different ideas, likes and dislikes, even different hand writing styles as well as relative autonomy. At various times, different parts take over control to govern her body and behaviour. Taken together, all of the alternate identities make up her personality.
So, people who have survived unimaginable traumas, potentially go on to be provided with care from a system that, because of lack of education, and use of screening tools does not actually help them. No one should ever have to deal with such a cascade of difficult to horrific events. Our mental health system has effectively adopted a stance where it is dissociated from the effects trauma has on children. In my opinion this is an appalling and nonsensical approach as childhood traumatisation IS responsible for costly long-term psychiatric problems including dissociative disorders.
Dissociative disorders require and deserve sensitive and specialist understanding for. Pointing local NHS Trusts/clinicians/future health professionals etc. in the right direction is Vanessa’s passion. There has to be purpose given to, and something positive gleaned from, a tortured existence. Her need is for individuals to become informed and better equipped (thus Continuing Professional Development) to really help those, at the earliest stage, whose lives are blighted by dissociation. There has to be hope for an approach where kindness lies at the heart of how professionals help anyone suffering. This total disregard for DID can not be allowed to perpetuate. NHS trusts can ill afford to ignore the reality of DID. The correct diagnosis is a prerequisite for any persons well-being.
As she proceeds down her journey Vanessa will begin to ‘knock on doors’, and be persistent in doing so. She will press on, seeking pertinent opportunities to speak to anyone working within the NHS, academia, community groups etc. In the meantime, further discussions will be presented looking into what exactly DID is and the effects this has on the quality of daily living, for example.
Finally, remember, kindness costs not a penny and yet has the most profound effect for any person; especially anyone in need. Kindness has the remarkable consequence on the quality of life for the bestower as well as the receiver. It is important to raise kindness towards oneself is also vital. Kindness, or self-compassion, may well be related to higher levels of wellbeing and better mental health. Are you able to appreciate just how big an impact a small gesture of kindness can have? We don’t need to do big things to make a difference. Please don’t underestimate the value of a kind word or a smile you give someone today. A smile alone has the potential to make a profound and immeasurable positive difference. Know that it does make a difference, even if you don’t see it.
Bellis M, and Zisk A. Biological Effects Of Childhood Trauma (2014) Child Adolescc Psychiatry Clin N Am. 23 (2): 185 – 222.
Howell F. (2011) Understanding and treating dissociative identity disorder. New York: Routledge.
International Society for the Study of Trauma and Dissociation (2011) Guidelines for treating dissociative identity disorder in adults, third revision. Journal of Trauma and Dissociation. 2011; 12:115-187.
Johnson JG, Cohen P, Kasen S & Brook JS. (2006). Dissociative disorders among adults in the community, imparting functioning, and Axis I and II comorbidity. Journal of Psychiatry Research. 40, 131–140.
Kluft, RP. (2009). A clinician’s understanding of dissociation: Fragments of an acquaintance. In P. F. Dell & J. A. O’Neil (Eds.), Dissociation and the dissociative disorders: DSM-V and beyond. New York, NY: Routledge.
Korzekwa M, Dell P, Links P, Thabane L and Fougere (2009) Dissociation in Borderline Personality Disorder: A Detailed Look. Journal of Trauma & Dissociation.10, 3: 346 – 367.
Lewis G, Appleby L. (1988) Personality disorder: the patients psychiatrists dislike. Br J Psychiatry. 153:44-49.
Ross CA, Miller SD, Bjornson L, Reagor P, Fraser GA, Anderson G (1991). Abuse histories in 102 cases of multiple personality disorder. Canadian J Psychiatry. 36:97–101.
Spring C, and Allan E. (2017) Dissociation and DID. The Fundamentals. Positive Outcomes For Dissociative Survivors.
Further information and resources
European Society for Trauma and Dissociation www.estd.org
First Person Plural, dissociative identity disorders association www.firstpersonplural.org.uk
International Society for the Study of Trauma and Dissociation www.isstd.org
Positive Outcomes for Dissociative Survivors www.pods-online.org.uk
Dissociative Disorders http://www.nhs.uk/conditions/dissociative-disorders/