Frequently asked questions from the PODS helpline
HOW DO I GET A DIAGNOSIS OF DID?
There are two routes: via the NHS and privately. To go via the NHS, the first step would be to speak to your GP and ask to be referred to a psychiatrist. It is relatively rare for psychiatrists in the UK to be aware of DID, let alone diagnose it. One of the reasons for this is that in the UK diagnoses tend to be based on the World Health Organisation’s ICD-10 (International Classification of Diseases, volume 10), which doesn’t list DID—it still has the older term ‘multiple personality disorder’ and there is very little detail for it. DID is based on the DSM (Diagnostic and Statistical Manual) which is more widely used in the US.
Most psychiatrists will be looking for the major, well-known mental health conditions such as depression, anxiety, bipolar, schizophrenia (in its various forms), post traumatic stress disorder or borderline personality disorder. Many will feel that your symptoms will fit into one of these classifications, and not pursue a differential diagnosis. Most will have received little or no training on dissociative disorders and will be unaware of diagnostic tools such as the SCID-D (Structured Clinical Interview for DSM-IV Dissociative Disorders). If you do have a genuine dissociative disorder, therefore, it is unlikely to be picked up within mainstream NHS services.
Some people have been able to enlist the help of private sector organisations such as the Clinic for Dissociative Studies in London to apply for funding from their Clinical Commissioning Group for an assessment with them. This may also lead to treatment being provided by them on behalf of the NHS. For further information see the article in this edition ‘The quest for diagnosis’.
Secondly, there is the private route. Both PODS and the Pottergate Centre offer initial screening tools for dissociative disorders, and these can provide a first step towards seeing whether a further assessment is helpful. PODS’ tools can be completed online. The Pottergate Centre can provide private assessments for dissociative disorders. There are also a number of clinicians in the UK who are trained to administer the SCID-D, and PODS is compiling a list of these. Private assessments can be expensive and may also be disregarded by an NHS psychiatrist, so may not be effective in terms of guaranteeing treatment, but they can be helpful for people who want to be sure that they do have a dissociative disorder.
THE SCREENING TOOLS I’VE COMPLETED SAY IT’S LIKELY I HAVE A DISSOCIATIVE DISORDER—WHAT DOES THIS MEAN?
A screening tool uses a list of questions to identify who may be at high risk of a disease or condition, but further tests are required to confirm or diagnose the actual presence of that condition. The two most commonly-used screening tools used for dissociative disorders are the DES (Dissociative Experiences Scale) and the SDQ-20 (Somatoform Dissociation Question). The DES focuses on psychological symptoms whereas the SDQ focuses more on bodily experiences. Both of these tools are completed by the patient/client, rather than a professional, and don’t provide a diagnosis, but they do indicate whether it would be a good idea to explore further and whether or not there is a high likelihood of having a dissociative disorder. To get a full diagnosis, the gold standard tool is the SCID-D (Structured Clinical Interview for DSM-IV Dissociative Disorders, compiled by Marlene Steinberg), which is administered face-to-face by a trained professional.
Screening tools have their limitations: there can be false positives, when someone overestimates their symptoms; and also false negatives, when someone underestimates their symptoms. The latter is particularly true when someone has ‘amnesia for amnesia’.
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WHERE CAN I GET THERAPY FOR DID?
Most people’s first port of call is via the NHS, either from referral from the GP or through mental health services. Some people have been successful in accessing suitable, long-term therapy this way, and the main advantage of course is that it is free. It is always worth exploring these options. The Clinic for Dissociative Studies (see question above) also provides therapy on behalf of the NHS as an approved provider and can often help people to get funding for it approved from their local Clinical Commissioning Group.
There are a number of voluntary organisations which provide free or subsidised counselling, such as Rape Crisis as well as a wealth of small charities throughout the UK. Although many will require some level of contribution on a sliding scale according to your income (for example a minimum of £5-£10 per session), it is still often cheaper than private counselling. Often there are a limited number of sessions available, although some do offer 2 years or more of therapy. START Counselling, a sister organisation to PODS, offers this in Cambridgeshire and we are also able to point you in the direction of other organisations throughout the UK.
The final option for counselling or psychotherapy is the private route. Many people write this off as an option altogether, citing the cost and assuming it is only for the super-wealthy, but it is still worth exploring even for people on a low income, as many counsellors in this field also operate on a sliding scale fee basis. The principal advantage is the choice that you have—you can ‘interview’ as many prospective counsellors/therapists as you like, and only begin work with someone you feel comfortable with, which is a luxury not usually afforded to people accessing therapy through the NHS or even in many voluntary organisations.
Many counsellors will also offer long-term or ‘open-ended’ therapy, so that—unforeseen circumstances aside—you can stay working with the same counsellor for as long as you need to, rather than being restricted by organisational policy or budgetary considerations. PODS holds an extensive register of ‘dissociation-friendly’ therapists throughout the UK with varying levels of expertise but all of whom are aware of dissociation and dissociative disorders. You can request a list of people in your area through a form on the website here.
WHAT KIND OF THERAPY DO I NEED FOR A DISSOCIATIVE DISORDER?
Most treatments in the UK are recommended by NICE—the National Institute for Clinical Excellence. They look at all the evidence on the effectiveness of treatments and recommend those which are seen to be safe and that work. The problem with dissociative disorders is that NICE have not yet produced any guidelines, so the best source of information is the Guidelines produced by the International Society for the Study of Trauma and Dissociation (ISSTD) which can be downloaded here.
These guidelines state that the most effective treatment is long-term psychotherapy, in an individual setting (as opposed to group therapy), and on an outpatient basis. That’s not to say that other kinds of therapy won’t help—some short-term therapies, for example, can be helpful to assist with the phase one work of safety and stabilisation (see below). And there are also a range of adjunct therapies such as EMDR which can be highly effective in treating trauma, if used safely and wisely by an experienced clinician within an overall treatment plan—although EMDR protocols must be modified with clients with dissociative disorders.
Many experts agree that it is the quality of the relationship between therapist and client which has the greatest bearing on the outcome of the therapy—not which particular school of thought the therapist has been trained in, nor their skill or even level of experience. The therapy should be safe, boundaried and ethical, and of course all professionals working with complex trauma and dissociation benefit from ongoing training and support, including specialist supervision.
Some people who have suffered extensive trauma find a traditionally psychoanalytical approach a little too daunting; some find CBT too limited in and of itself; some find a person-centered approach insufficiently boundaried or directive. There are pros and cons therefore of each style, but the most effective treatment to date seems to follow a ‘three phase’, trauma-informed approach, where the first phase focuses on stabilising symptoms and establishing safety; the second phase focuses on processing traumatic material; and the third phase focuses on consolidating these gains and integrating self-states towards a new life.
DO I HAVE TO GIVE UP MY DRIVING LICENCE IF I HAVE DID?
In the UK, the right to drive on public roads (owning a valid driving licence) is overseen by the DVLA (Driving and Vehicle Licensing Agency). The DVLA needs to be satisfied that people with a licence to drive are safe to do so, and won’t pose a risk either to themselves or others. Some mental health conditions are considered to affect this risk, and consequently if you have certain conditions you must inform the DVLA. There are also a second set of conditions about which you must inform DVLA, but only if it affects your ability to drive. A GP can let you know if you have a ‘notifiable’ condition—if you don’t then inform DVLA, you can be fined up to £1,000, and you can also be prosecuted following an accident.
There are no mental health conditions which automatically stop you from driving, but if you are diagnosed with one of the following conditions (whether or not you agree with that diagnosis), you must inform DVLA:
- Bipolar disorder
- Paranoid schizophrenia
- Psychotic depression
- Schizoaffective disorder
Unfortunately, many people with a dissociative disorder are wrongly diagnosed with one of these conditions, which can complicate matters for them. This is one of the risks of seeking treatment via the NHS, if the psychiatrist you are referred to has little or no awareness of dissociative disorders.
If you have been diagnosed with one of the following conditions, you need to tell the DVLA if it affects your ability to drive:
- Eating disorder
- Obsessive compulsive disorder (OCD)
- Personality disorder
- Post-traumatic stress disorder (PTSD).
There is a form to fill in, called M1 Confidential Medical Information, which is available here. It asks questions about the medication you are taking, who is treating you, and so on. A decision is normally made within about 6 weeks, and to make that decision DVLA might contact your doctor or consultant, arrange for you to be examined, or ask you to take either a driving assessment, eyesight test or driving test. You may have your licence stopped, or you may be issued with a shorter licence (e.g. 1, 2 or 5 years), among other options. If you voluntarily surrender your licence, you may be able to start driving again sooner than if it is taken away on medical grounds.
In terms of dissociative symptoms, the most pertinent questions on M1 are:
- Do you have serious memory problems or episodes of confusion?
- In the past 12 months, have you suffered any fits or blackouts?
Many people with a dissociative disorder would have to agree that they have serious memory problems—for example, not remembering what they’ve been doing while switched to another part of the personality, or amnesia for the trauma. It may be that in asking that question the DVLA is concerned about conditions such as dementia or Alzheimer’s, but nonetheless answering honestly (as you must) could lead to your licence being revoked. Many people with dissociative disorders also experience episodes of confusion, especially when experiencing flashbacks. Some professionals would argue that switching constitutes a ‘blackout’. A lot would therefore be down to interpretation.
As DID is not on the list of DVLA’s notifiable conditions, the key question is whether dissociative symptoms affect your driving. It is best to get honest opinions from others about this, and to consider whether it is fair and ethical for you to drive—assessing the risk of injury or death to yourself AND others—if you are not in control of switching, you lack co-consciousness, and/or you are highly emotionally distressed. If you want to keep your licence, it is essential that you work on grounding skills and improving collaboration and communication between parts to ensure that no objective professional could deem you to have loss of consciousness, memory problems or confusion while driving. If you are in crisis, especially to the point of admission to a psychiatric unit (another question asked on M1), then it may be safer to desist from driving for a while. Everyone experiences a dissociative disorder differently, so everyone needs to make their own judgment on the matter, but it is important that this is done with an honest evaluation of the risks and the ethical questions that it poses.
DO I HAVE TO NAME MY PARTS?
A core part of dissociative identity disorder is a fragmented sense of self, where aspects or parts of the self or consciousness are segregated from each other, in order to cope with overwhelming trauma. For many people with DID, these separate self-states feel so ‘ego-alien’, so strange and ‘not-me’ that they manifest and are experienced as separate personalities or people. These parts need to be experienced as ‘not-me’ for them to fulfil their function: of disowning the trauma, and the overwhelming feelings associated with it. Therefore it is entirely understandable why many people with DID, in experiencing themselves as ‘other’, choose a name different to their birth/legal name when they have switched to these parts: it is a highly effective survival strategy.
However, there are also many people with DID who experience their parts more as a shifting sense of self, or as different aspects of themselves, and feel that by giving these parts names—by personifying and ‘reifying’ them, or making them ‘real’—they are reinforcing the segregation and sense of disconnection from one another. Some people with DID are also averse to naming parts because they feel intense shame and stigma. It may also feel too vulnerable to name parts and allow them to be addressed as such. So there are a variety of reasons for and against naming parts.
The ISSTD Guidelines (2011) state the following:
It is countertherapeutic to suggest that the patient create additional alternate identities, to name identities when they have no names (although the patient may choose names if he or she wishes), or to suggest that identities function in a more elaborated and autonomous way than they already are functioning.
Many people with DID find it helpful to name their parts so that they can identify ‘who’s who’ and better understand the conflicts between parts and the reasons for their ongoing segregation; others choose to identify their parts by developmental age or predominant function (e.g. ‘the sad one’, ‘the eight year old’). What is important is that the person with DID has the right to choose, and that their choices, insofar as it is possible, are geared towards their overall, long-term wellbeing.
IS RECOVERY POSSIBLE?
At PODS we firmly believe that recovery is possible for many, if not all, people who have suffered trauma—provided they receive the right support. This is based both on personal experience; the clinical literature; research; and studies in comparative fields. If you were able to survive your childhood—when there was little or no support, when your brain was relatively underdeveloped, when you had little or no control over your circumstances, and when there was little or no acknowledgement of the trauma you were suffering—then we believe that you can recover from the effects of that trauma now as an adult, with the right support and with the right approach.
Historically, however, relatively few people have enjoyed a sustained and significant recovery from complex, chronic trauma, partly because there was so little understanding about trauma, and treatment was inappropriately-directed. With recent advances in neuroscience, and a proliferation of the clinical literature, it is becoming increasingly apparent that there needs to be a trauma-focused approach to recovery, involving both the body and the mind, and that if a step-wise, phasic approach is taken, significant recovery really is possible. Unless we have a brain injury or disorder such as dementia, we are all able to learn new things every day—people’s names, how to get to a new place, how to use a new tool—and while we can learn, we can recover, because recovery is about the brain (and body) learning new responses and setting up new habits.
There are however numerous obstacles to recovery, and a lack of belief in recovery is probably the biggest. To recover, you have to believe that you can recover, and then you have to pursue it single-mindedly. It doesn’t just happen. It is an arduous process, and many people give up in the process. Other obstacles include ‘secondary gain’—where, for example, there is more to gain from staying sick than there is from being well—as well as being invested in multiplicity (and so being unwilling to integrate and process the trauma through to resolution); advanced age (especially if combined with geriatric pathology such as Alzheimer’s); comorbid mental health difficulties; and drug or alcohol dependence, to name but a few.
Recovery is also difficult to quantify—how recovered is recovered? We believe that a healthy goal is to be able to live a fulfilling life, not necessarily entirely free of struggles, but in a way that the symptoms of trauma do not negatively or unduly impact daily life, and where there are far more good days than bad days. This allows for the reality of other life stresses (which affect everyone, trauma or no trauma experiences) and the unreality of ‘a perfect life’. To be able to engage in work or a vocation, to be able to engage positively in relationships (to the degree of one’s choosing), to experience a good measure of physical health (as opposed to the chronic health conditions specifically connected with unresolved trauma or chronic stress), and to experience a sense of safety and fulfilment in life, would seem to be good aims for recovery.
DOES RECOVERY INVOLVE KILLING OFF PARTS?
When life is experienced with multiplicity, having a variety of different parts of the personality is felt to be ‘normal’, and it is difficult to imagine life in any other way. Being multiple is the way someone with DID makes sense of the world; it’s not surprising therefore that they can feel anxious at or averse to the thought of life operating any differently. Parts have protected against both the trauma, and overwhelming feelings—how could you survive without them?
However, the various parts of the personality make up the complete person: it is not possible to ‘kill them off’ as they are part of ‘you’. The sense that they are completely separate is a psychological trick to protect you from their trauma and distress, but the reality is that they are part of you whether you want them to be or not! Thinking about it another way, you grew up from an infant to a child to an adolescent, to an adult. Was the ‘child you’ killed off when you grew up? Is the ‘adolescent you’ now ‘dead’? Or are they all part of who you are and were, and evolved together into the complete person that you are now? Integration (or as some people call it, ‘fusion’) is about removing the barriers—barriers created by trauma—between the parts of your personality, your memory, your feelings, so that you can have a fuller sense of who you are, not less. It’s about connecting up what has been disconnected: gaining more, not losing anything at all.
The expression of these various parts of the personality may evolve and change over time as the needs that they represent are integrated into the whole. Even for a non-traumatised person, as a 5-year-old they might have played with a toy car; as they grew up and reached adulthood, they were able to progress onto driving a real car. Which is preferable? Many traumatised parts have needs based in unmet attachment from early childhood. Those needs don’t go away, and those parts are not excised; integration simply means that you learn to express those needs in a way more appropriate to here-and-now, rather than being held in suspension in the there-and-then. The need to play, expressed directly and with simplicity in our childhood selves, evolves over time into an adult expression of ‘play’: having fun, enjoying good things, such as watching or playing sport, exploring places, holidays, trips out, hobbies, socialising. They are the same needs, but expressed in more complex and multi-layered ways. The person with DID who can only currently ‘play’ when in a child self-state, through integration can learn to ‘play’ as an adult; the person with DID who expresses attachment needs only in a child self-state, through integration can learn to express those needs in adult-appropriate ways, such as through the therapeutic relationship, through romantic relationships, and through appropriate care-seeking from services and agencies. This then combines both the child’s need with the adult’s ability to express autonomy and make choices that were unavailable to the child.
So recovery doesn’t involve—cannot involve—killing off the parts of the personality. Instead, the opposite is true—they are fully welcomed, connected with, and enjoyed, and evolve together to become a fluid, integrated, fully co-conscious, complete, adult person.
IS IT POSSIBLE TO HAVE A JOB AND HAVE DID?
One of the great things about DID is that it is a brilliant survival strategy, segregating off traumatic experience from day-to-day life. This is what leads to the development of the ‘Apparently Normal Personality’, whose focus is day-to-day life, and the ‘Emotional Personality’ (or traumatised parts) whose focus is on surviving trauma. In practice this means that there are often ‘islands of ability’ as well as ‘islands of disability’. Within these islands of ability, many people with DID manage to hold down successful, demanding jobs, at least until (although sometimes also during) a breakdown.
There is a significant proportion of people with DID, however, whose coping capacities are so overwhelmed just dealing with the after-effects of trauma that work is out of the question, or at least most full-time work. However this should not in most cases be seen as a permanent state of affairs. Indeed, there are many benefits to work—social support, something to focus on, development of skills, distraction from the trauma, a sense of identity, something to be part of and belong to, and a source of self-esteem and resilience. Especially in the light of budgetary austerity, a reliance on welfare benefits can in and of itself be very anxiety-producing, given the powerlessness with which many people are faced as they are deemed to be ‘fit to work’ in a one-size-fits-all approach. Building up confidence and skills through something like voluntary work can be a really helpful way, therefore, to develop more autonomy and start building a future which is not defined by the debilitating effects of trauma.
In order to be able to access work, or stay in work, it might be worth considering what support would enable you to do so, and how best to go about asking for that support. Many employers struggle to understand mental health at all, let alone dissociative disorders. It can be helpful sometimes, rather than baffling them with terms they have never heard, to find some common ground, for example talking in terms of ‘complex PTSD’ rather than DID, as many people are much more aware nowadays of (simple) PTSD and so it can be a bridge to understanding. Employers have to abide by the Disability Discrimination Act, and need to make reasonable adjustments if you consider yourself disabled by your mental health difficulties. However, you don’t need to overwhelm them by telling them everything—explaining the ins and outs of all the different parts of your personality may not be helpful; but it might enable them to support you if you explain how you need regular breaks, some flexibility to attend counselling, a quiet working environment and clear communication, for example. Think in terms of what they can practically do to help you rather than needing to have them understand DID.
It’s also important to consider how dissociation might affect your work, and whether it would pose any risks to safety—either your own or anyone else’s. If you have consistent difficulty staying present as the adult, then some roles may be neither safe nor ethical: from caregiving roles (nursing, counselling, support work) through to operating machinery. In that case, could the role be adapted, or what could you do to enable that you remain as the ‘Apparently Normal Personality’ at work? What might push you outside your window of tolerance? What might help you stay focused and on task? Do you like working alone, or do you function better as part of a team? There are lots of roles which might not only benefit you, but where you could have a valuable contribution, and in recovery from trauma identifying your skills and strengths is just as important as recognising your vulnerabilities.
ARE THERE MEDICATIONS THAT ARE HELPFUL IN TREATING DID?
When thinking about medication, it’s important to ask what you’re trying to achieve: mostly people are looking for a cure, or at least an eradication of their symptoms. But there are no drug treatments that have been developed specifically to treat DID. No drug will make parts disappear, undo the trauma, or magic you better. But there are a range of medications which your GP or psychiatrist might prescribe which could help to reduce your symptoms sufficiently for you to be able to engage profitably in therapy: for example anxiolytics, which help to reduce symptoms of moderate to severe anxiety, or antidepressants, which can help to reduce depression to manageable levels.
The danger of relying on medication however is that it doesn’t solve the underlying problem—it just palliates it, or covers it up, and can lead to a false sense of security or a ‘flight into health’ where the real issues are just suppressed. Many psychiatrists, not understanding DID, will be prone to prescribe anti-psychotics (also known as neuroleptics) but these are not recommended for use with dissociative disorders. Additionally, as Joanna Moncrieff has written about so extensively, this family of drugs has serious side-effects and can significantly shorten life expectancy. They may entirely suppress the ‘voices’ of other parts of the personality, but by doing so there is no pathway to recovery or integration—they are just being further dissociated, but via chemical means. The ISSTD Guidelines recommend the judicious use of medication as ‘fire extinguishers’ to deal with short term crises, but recommend the use of talking therapies as the primary strategy long term.