I'm getting the nation talking about mental health by taking on my 5K Walky Talky this May. All while raising money to support people severely affected by mental illness. Together we can help people living with mental illness get the help they need. Your donations will mean:<£10> could help Rethink Mental Illness send a small gift and personalised Christmas card to someone who cares for a person living with mental illness.<£50> could help pay for a support group coordinator to stay in touch withisolated carers by phone for six weeks.<£25> could help one of Rethink Mental Illness' experienced advisers review information for carers so its accurate and up-to-date 

May I use this opportunity with Mental Health Awareness Week 2012 to share a story. This has taken a while to write. 

I am writing to share a true story with you. Essentially the purpose for this overview is to raise awareness and insight into mental health issues pertinent to a 50 year old called Vanessa. She is so keen for her experiences to count for something positive. Vanessa lives alone with her dog, with no family other than an aunt who resides in Tasmania, her dog is vital to her carrying on. Vanessa trained him to become her assistance dog for mental health. 

Vanessa has lived with disordered eating (both restrictive i.e. Anorexia; and binge/purge i.e. Bulimia) since the age of 12. She ‘found’ self harm and took her first overdose around the same time. Her self awareness was barely skin deep until the last eight years, so had no idea why, or how this behaviour arose. It was not as though she knew or had heard about self harm and barely knew anything about eating disorders. Why had she turned out like this? For decades this was her only means to manage day to day. Vanessa believed she was a complete failure, a misfit and felt guilty for existing. In recent years Vanessa is beginning to understand why she fell into the arms of self destruction and went on to spend decades in a revolving door of hospitalisations. She is passionate to use a voice she has begun to find, and use, to minimise the chances of others following a similar terrifying existence. She yearns to stimulate discussion and initiate change especially with respects to how NHS mental health services regard dissociative disorders.

Dissociative Disorders develop as a result of severe childhood abuse. Dissociative Identity Disorder (DID) (formerly known as multiple personality disorder MPD ) is a severe psychiatric condition strongly correlated with a history of chronic and unremitting childhood abuse.  The prognosis for Dissociative Identity Disorder is good given the right treatment; however, treatment is lengthy, being measured in years and decades rather than months.  It should be understood that DID results in extensive mental and physical disabilities of a nature which fluctuate from day to day and even from minute to minute.

DID has been described as ‘a disorder of hiddenness’, as the vast majority of people with DID, often motivated by shame, will attempt to conceal their symptoms and way of being. This in part explains why, despite DID being so prevalent, few people are properly aware of it. In fact, many people with DID are high-functioning members of society with good careers before some crisis or build-up of stressors leads to a sudden and catastrophic ‘breakdown’. Others spend a great deal of time in the psychiatric system without receiving appropriate help and never manage to establish a career. This is the case for Vanessa.

There are a range of dissociative disorders which are characterised by ‘a disruption in the usually integrated functions of consciousness, memory, identity or perception of the environment’. So for example memories and feelings may not go together – memories may be recalled with no accompanying affect or emotions, or there may be overwhelming feelings with no conscious memory of their cause.  There is also often a lack of a coherent sense of autobiography, and this itself leads to problems with a sense of identity – ‘Who am I?’ and ‘What has happened in my life?’ This all results from dissociation acting as a creative survival mechanism in the face of overwhelming trauma, whereby the mind shields itself by segregating the experience, or splitting it off into its constituent parts rather than experiencing it as what would be an unendurable ‘whole’.

By some miracle Vanessa graduated in 1993 with a BSc Hons Applied and Human Biology. Following this she was admitted onto a ward in an old style Asylum. There she remained for a year, for the majority of the time under section 3 of the Mental Health Act. Apart from a short spell in hospital during her final year at university this was the first time, aged 22 the problems she’d suffered with, began to be addressed. Supposedly. By this time she had lived alone with, and “hidden” problems surrounding food, eating and self harm. So after approximately a decade this way of managing existence had become well entrenched. 

The diagnosis that stuck the longest, until 2020, was Borderline Personality Disorder (BPD). Unfortunately the attitudes of professionals were more often, than not, negative. Vanessa was considered difficult to treat. Her medical notes mention the word “untreatable”. Psychiatrists and mental health teams helping Vanessa were in general explicitly negative and uncaring. They perceived her as manipulative and annoying. It is often stated in research that health professionals saw individuals, like Vanessa, as “bad” and not “ill”. This was no doubt due to the challenging behaviours Vanessa engaged in, although all attempts to cause hurt and damage were directed to herself alone. The perceived threat from how she was treated, served to further her negative concept of self. She firmly believed she was worthless, and at fault as a human being. Treatment approaches (e.g being held down by six staff members, while a metal clamp was inserted into her mouth, wound open, and her nose pinched in order to force Vanessa to swallow nutritional substance), although used to sustain life, compounded issues that had roots in early life trauma and neglect. Vanessa, as a revolving-door syndrome patient, would have undoubtedly been further retraumatised by the abandonments of repeated cycles of beginning and ending of therapeutic interventions.

Anorexia led her weight to drop dangerously low e.g. 4 stone 9 pounds in her mid twenties and 5 stone in her mid forties. Overdosing led her to intensive care unit (ICU) care on a life support machine in her thirties; prior to this she required admission to ICU with a specialist liver unit. These brushes with death did nothing to impress a need to change her behaviour, or scare her. Self injury for Vanessa meant she burnt herself (using a naked flame). Her limbs resemble a extensive patchwork of scarring due to full thickness burns, skin grafts and unhealed wounds not helped by a status of malnourishment. Considering the juxtaposition between considerable risks she took, with a need to engage in this behaviour in order to survive, is profound.

Existence was and still is a horrendously torrid place to be. Vanessa is scared to live and scared to die. She had no real voice or self-awareness for decades. Desperate attempts to eradicate herself was the only thing that mattered. Playing ‘Russian roulette’ with her life brought her a sense of satisfaction. Self awareness is beginning to grow now, so she believes and senses this was the only “voice” she had to convey the complexities trapped, and buried deep within. Sometimes her self destructive behaviour guaranteed the intensive care she craved. May be this enabled her to connect with a sense of what it was like to matter; and what it was like to feel real.

No one realised Vanessa’s behaviour and demeanour (i.e. symptoms) meant she was living with a far more complex, misunderstood severe psychiatric condition strongly correlated with a history of chronic and unremitting childhood abuse. This had been wholly invalidated within the adult mental health system for 27 years. 

Vanessa co-ordinated her own care in recent years due to that lack of understanding and support from the mental health system. Following several years of research and assessments with trauma specialists (she paid privately for) she finally received a diagnosis for Dissociative Identity Disorder and Complex PTSD (2020). This arrived though the letter box at the beginning of the first lockdown. She had to seek this privately as no one appeared to understand or validate her understanding and feeling, nor heed to her requests (and a trauma specialists’ requests) to be formally diagnosed. By this stage she had endured a unprofessional discharge from mental health services in May 2019. The innumerable incompetences she faced were not safe and displayed no compassion. A formal complaint for this is currently in the hands of the Parliamentary and Health Service Ombudsman. Complaining does not come naturally to Vanessa. However I know she felt she had to speak out, for fear others experiencing a similar process of discharge. Someone already vulnerable may attempt to take their life.

Vanessa at the point of discharge in May 2019 was at a dangerously low body weight, severely malnourished and so feared for her life. It is absurd no one was able to offer her appropriate help or support. This is not uncommon for adults with chronic eating disorders. Indeed a number of her associates, friends, have died as a result of Anorexia or suicide. 

Vanessa has continued to research. She was interested to look into dissociative disorders in eating disorder patients. She uncovered some case reports. For example, the International Journal for Eating Disorders (1993) highlights MPD i.e. now called DID, should be considered in any atypical or treatment resistant eating disorder patient. Another case report in the American Journal of Psychotherapy (1990) states that clinicians dealing with eating disorders should be aware that some patients may represent a subgroup in whom the underlying cause for the eating disorder may be DID. The report goes on to say, these patients do not respond to conventional eating disorder treatment approaches, and only when the underlying multiplicity is identified and treated by a trained clinician, will the patient's eating-disorder symptoms improve. Why and how on earth our NHS Trusts and the National Institute of Clinical Excellence fail to acknowledge DD. This has to change if we are to help adult survivors of childhood abuse. This is absolutely critical in light of the COVID 19 pandemic and the consequences this has not only for children developing eating disorders, but also for those trapped within a trauma rife environment, behind closed doors.       

Because of the lack of help for adults with eating disorders Vanessa knew she had a choice: a) either she started to eat solids to reduce the chances of a medical emergency or b) she could, at around 5 stone, hang precariously in light of a medical emergency occurring at any time. The odds of this happening were high. She chose the former, and started to introduce minute amounts of solids. This is something she has continued to challenge throughout 2020 to date. Vanessa battles on 24/7 to change her behaviour. Confirmation of a DID diagnosis did much to validate her lived experience. It is a terrific amount for her to come to terms with.

Following her diagnosis Vanessa fought for appropriate treatment which is often not supported or available under NHS Trusts. Fortunately her GP supported a referral out of county for specialist treatment and funding was requested. To cut this part of the story short, she is waiting to learn is she is to embark in treatment with specialists in Dissociative Identity Disorder. A specialist London clinic (for Diassoaictive Disorders) is in process of writing a detailed report with hope to convince the local CCG how relevant and vital treatment is. Treatment is necessary for a minimum of approximately six years.

It is well documented that people with Dissociative Identity Disorder often spend many years in the mental health system, and it is often misdiagnosed as schizophrenia, or other psychotic disorders, affective disorders, substance abuse disorders, or a personality disorder (most commonly borderline personality disorder). There are no National Institute of Health and Clinical Excellence (NICE) guidelines for the treatment of DID yet and so the best available treatment guidelines are those supplied by the International Society for the Study of Trauma and Dissociation (ISSTD). DID is a well-researched, valid, and cross-cultural diagnosis. The view of many people with regard to DID has been influenced by film and TV representations such as in the book and film Sybil and Split. Many people also believe that it is a rare condition. But an increasing body of research is providing a new and more accurate representation of DID. Despite widespread opinion DID is not rare. Research indicates that it affects between approximately 650,000 and 1.85 million people in the UK.

I sincerely hope this conveys how passionate Vanessa is to voice her experiences, concerns and need to instate change. Acceptance that dissociative disorders are real and the need for professionals to embark on training is dire. NHS Trusts need to take on board the necessity to screen individuals. It is vital for clinicians to consider DD in any atypical or treatment resistant eating disorder. Vanessa firmly believed it was her fault, entirely. She never found an existence away from disordered eating and as treatment was withdrawn, concluded she must be inherently wrong, useless and unworthy.

There are a number of well-validated screening tools available to assist diagnosis. Vanessa was screened using the Dissociative Experiences Scale (DES) the Somatoform Dissociation Questionnaire (SDQ-20) and the ‘gold-standard’, the Structured Clinical Interview for DSM-IV Disorders (SCID-D). Despite this, perhaps the majority of people with DID will fail to receive a correct diagnosis as some mental health professionals, despite the extensive literature, refuse to believe that it ‘exists’. Children and teenagers who have negotiated and survived chronic trauma during their entire developmental years deserve appropriate treatment, they really do. Many like Vanessa are misdiagnosed and pigeon holed into a ‘one size fits all’ box e.g. Borderline Personality Disorder, and this simply does not reflect the reality for some who have survived despite the worst atrocities against them. Vanessa believes this is an insidious invisible tragedy, a terrible injustice in the United Kingdom. Society as a whole is dissociated from the reality of chronic childhood trauma. The need for appropriate triaging and treatment options need to be on a par with those after a traumatic car crash. Just because you can not see the wounds doesn’t mean they do not exist.

Vanessa is so keen and holds a sense of urgency to shine a light on the mental health issues and experiences discussed. She has survived against all the odds stacked against her. Her rich, yet adverse experiences have the potential to enable others to gain much insight. It makes total sense that an infant’s/child’s/teenager’s brain development, when exposed to ongoing abuse and neglect (all forms), will be adversely affected.

She will not be alone and there will be implications for those yet to hit the mental health system. She fears a premature death where her troubled existence, will account for nothing. Considering her experiences will count for nothing to help others, tortures her. Somehow she needs to help instigate discussion and bring about change. She has found a voice and therefore dreams to help be a voice for others, who have not yet found theirs. It has taken Vanessa five decades to find a voice, although it is still very early days. She is adamant her story may somehow help professionals consider training (there are many options available) and so continue their professional development. There is a potential to improve the care and offer of appropriate treatment for those living with undiagnosed dissociative disorders.

There has to be a reason for her existence. Vanessa wants to convey her story to minimise the amount and nature of suffering and agony she endured happening to others. She doesn’t want anyone to go down a similar road, trapped, invalidated and retraumatised within the mental health system. She is also passionate to use her experiences to help others, especially young people whose lives are affected by eating disorders.

Thank you so much