Individual psychotherapy is the treatment of choice for dissociative identity disorder (DID) according to the treatment guidelines issued by the ISSTD (International Society for the Study of Trauma and Dissociation). But just because one-to-one therapy is demonstrably highly effective (Brand et al, 2009), it does not mean to say that it will happen automatically. In many areas of the UK, people have battled unsuccessfully with the NHS to get the therapy they need, and so rather than starting to recover, people with dissociative disorders may spend years in a treatment wilderness, alone and receiving little or no help.

HOW DO I GET HELP?

This is the most frequently-asked question on the PODS helpline. By definition, people phoning us are aware that their problem falls somewhere on a dissociative or post-traumatic spectrum. What they are usually less aware of is how to find appropriate treatment. A common misconception is that the NHS is the only route. Most of us have been brought up to assume that this is the case – after all, if you have a chest infection or recurrent nosebleeds or want to change your method of contraception, you go to your GP; if you are involved in an accident, you go to A&E. We are all aware that you can try to register with an NHS dentist if one is available in your area, or you can pay go to private. Some people are used to paying privately for osteopathy or to see a chiropodist. We are not quite so sure what to do in the case of mental health.

When my wife had a breakdown in 2005, she resisted talking to her GP about her symptoms at all. It felt too shameful and she was worried about what would be detailed on her medical records, a potential future black mark for employment or health insurance purposes. Eventually she did open up to a GP but only once she had started seeing a counsellor privately: it took several months of therapy for her to overcome the stigma and the fear and to be able to ‘confess’ to her doctor that she was receiving counselling and that she had been sexually abused. At many levels, her GP was great: very understanding and supportive, available in emergencies, discerning in her prescribing. She knew nothing at all about dissociative identity disorder (she asked Carolyn repeatedly to tell her what it stood for and how to spell it) but her ego was not threatened by her ignorance and she subscribed happily to the concept that the patient is the expert on themselves. Worryingly, however, during one of Carolyn’s particularly difficult patches, her powers to help appeared particularly limited: “I don’t want to refer you to mental health services,” she said. “You’re in enough of a state as it is.” It was a rather damning indictment on the reputation of our local NHS psychiatry team. “They won’t do anything for you,” she explained, somewhat apologetically. “You’re better off sticking with your private counselling and avoiding them.” Then, with a wry, mirthless smile: “You’ll get through this, I know you will.”

In these circumstances, we seemed to have little choice other than to continue to seek help privately, but many people feel trapped into following a route set by the NHS. There is a belief that “This is the way it is”, and experts with letters after their name will decide what is wrong with you and how you should be treated on the basis of a 15-minute consultation. Sometimes it works, but it can be an incredibly disempowering and even shaming experience. Many psychiatrists do not believe that dissociative identity disorder exists, have not been trained to recognise let alone diagnose it, and shoehorn people into the ‘therapeutic interventions’ that are offered locally. For many, with the Government’s emphasis on the IAPT scheme (Improving Access to Psychological Therapies), this is limited to 6 to 12 weeks of Cognitive Behavioural Therapy. A number of people we have spoken to have been ‘encouraged’ to attend a ‘therapeutic community’. One person with dissociative identity disorder and a First Class degree spent 6 months in one – learning to wash up, as she pointedly told us. She received no individual therapy during that time.

Looking back at our situation in 2005, neither Carolyn nor I knew much about therapy or counselling at all. We just hadn’t come across it previously, so it didn’t occur to either of us to seek it out. We spent a year crashing around in chaos and relational turbulence until eventually someone pointed us in the direction of a counsellor 20 miles away. We were desperate and hopeless and at the end of ourselves. We both assumed that counselling lasted 6 weeks or so, at tops 6 months. 6 years later, we now know that therapy for dissociative identity disorder is not quite so ‘brief’. But that referral to the counsellor whom Carolyn still sees was life-changing and a turning point both for our marriage, which was teetering on the brink of self-destruction, and for Carolyn’s mental health. Things did get worse before they got better in many regards, but from that initial assessment meeting we at least had hope: “I think I can help you” said the trainee counsellor to Carolyn before she left, little knowing what she had let herself in for.

A lack of awareness about the existence of therapy, let alone an understanding of the jargon or how to go about accessing it, is a massive stumbling block for many dissociative survivors, who in their understandable ignorance feel that the NHS is their only option. We now encourage people to seek out professional therapeutic help from the private or voluntary sector wherever possible. However, we readily acknowledge that there are a number of hindrances. Denial is probably the principle barrier: until people come to accept that there is a problem, that the problem is not going to go away by itself, and that the problem is big enough to need dealing with, few would consider worthwhile either the effort, the expense or the sheer pain of therapy. And many struggle with an inherent sense of unworthiness: do I really deserve to take an hour or two or more (including travelling time) out of my busy week, impacting perhaps upon my partner or children or my job, to sit down with someone and talk just about me? It can feel an incredibly selfish thing to do. Of course, it’s not – it’s absolutely essential for recovery. But many hear in their heads the vile accusations of abusive caregivers from the past: “You’re so selfish”, “It’s wrong to need”, “Me, me, me!” and it can take some people years to actually allow themselves the space, the time and the expense of seeking therapy.

And then there are a raft of logistical hurdles to overcome: how will I pay for it, how will I get there, how will I arrange time off work or find childcare, how will I find a suitable therapist, how will I find someone who knows about dissociative identity disorder, how will I overcome my agoraphobia or OCD, how will I find where I’m going when I’m switching, how will I manage the build-up and survive the aftermath? These are all real and pressing concerns and are experienced by many, many survivors. If people persist in thinking that they are not worth helping, or that no-one will believe them, or that therapy is impossibly expensive or risky or ‘wrong’, then those beliefs in themselves will determine the outcome: they won’t even start to look for help. If you believe that you are bad, what’s the point? There’s nothing that can be done. But if you are able to say, “I am not bad – I am traumatised and I am experiencing various symptoms of unhealed suffering for which help is available somewhere”, then you can start to break the problem down into bite-size chunks to make the impossible possible.

HOW DO I FIND A THERAPIST?

Firstly, where to look? It is a sad reality that only a small proportion of counsellors and therapists are aware of dissociation, but that number is growing year on year. On our PODS training days we have begun to collate contact details for people who are willing to work in this field, and nearly 200 counsellors have signed up to say that they are happy for us to share these with prospective clients. We do not ‘recommend’ anyone and we leave full responsibility with the client to check people out and ensure that they are suitably qualified, experienced and trained to meet their particular needs. But at least it is a pointer in the right direction. Other organisations such as TAG (the Trauma and Abuse Group) and ESTD (the European Society for Trauma and Dissociation) are sometimes able to put people in touch with suitable therapists. There are then a range of resources available on the internet to search more generally for counsellors. Two of the main bodies which oversee therapy in the UK, the BACP (British Association for Counsellors and Psychotherapists) and the UKCP (United Kingdom Council for Psychotherapy) both hold lists of qualified counsellors. Links to their search facilities are available on the PODS website, along with a range of other professional bodies such as the ACC (Association of Christian Counsellors), and the Sensorimotor Psychotherapy Institute. There are also privately-run directories such as the Counselling Directory which can help to locate therapists in your area. Checking that someone is properly qualified and registered with a professional body is absolutely essential.

HOW MUCH DOES THERAPY COST?

Many people believe that therapy is always expensive. While it is true that the usual rate for an hourly session can range from £30 to £60 or more, it is always worth checking with individual therapists to see if they offer reductions for low income, operate on a sliding scale basis or will even counsel for free. Many will negotiate dependent on your circumstances. When money is tight, another option is to approach local Rape Crisis centres, who are often able to provide low-cost counselling, at least for a time-limited period. Various charitable groups also often provide subsidised services, including the national mental health charity MIND who have regional offices throughout the UK. Again PODS holds a list on its website of useful organisations to contact. Even if there is no apparent therapy provision near you, charities or counselling centres may know of other people you may be able to approach in the locality. It does take some effort, but it is worth it in the long-run.

DIFFERENT THERAPEUTIC APPROACHES?

The jargon associated with psychotherapy can be very off-putting and difficult to overcome. In this article ‘counselling’ and ‘therapy’ or ‘psychotherapy’ are being used as interchangeable terms, but many people make a distinction between them. Counselling tends to refer to more short-term work for generalised issues, and psychotherapy assumes longer term work with more complex or specialised issues. Just as survivors may dislike being labelled, the same can be true for professionals working in this field and it is best to treat everyone as a unique human being and actually talk to them to find out how they view themselves in relation to you. There are some psychologists also working in private practice, but the majority are usually found within the NHS. In essence their approach may not differ much from that of counsellors and therapists, but they have arrived at their current position via a slightly different route, with a degree or doctorate in counselling or clinical psychology and they may be registered with the Health Professionals Council. Psychiatrists are a different breed altogether, being medically qualified doctors who have specialised through further training in psychiatry. Very few of them will have undertaken any kind of therapy for themselves and tend to focus on diagnosis, prescribing medication or directing services – it is fairly rare that a psychiatrist will engage in one-to-one therapeutic work. If you pursue therapy privately, you may never come into contact with a psychiatrist – which some feel is a good thing, but there are some wonderful psychiatrists out there too!

The range of ‘modalities’ or ‘approaches’ used by counsellors can be extremely confusing: cognitive behaviour therapy, psychodynamic, Gestalt, existentialist, person-centered, dialectical behaviour therapy, sensorimotor psychotherapy, humanistic, Rogerian, Adlerian, psychosynthesis, integrative … to name but a few. See our box below for a very brief overview of what these terms mean. In reality, the label means different things to different people and only by talking with and perhaps even meeting a counsellor can you really gauge whether you would feel comfortable with their approach. There is currently no specific recommended modality or pathway to working with dissociative disorders , and although you may be better off working with someone who is already experienced in this field, the important thing is the relationship you form with them and their willingness to treat you as uniquely you rather than according to any preconceived idea. People with dissociative identity disorder exist on a wide spectrum and no two are the same, so it is important that therapists with prior experience don’t assume that you will think and feel and react and behave the same way as their last dissociative client did! It is often recommended that they seek specialist supervision when working with dissociation and complex trauma, but this is their responsibility, not yours, although it is a reasonable question for you to ask.

And this is the important point: that it is okay for you to be picky and to choose your therapist yourself. You do not have to operate on the basis of “I have to take what I’m given” – you are the client and it is essential that you are comfortable working with the person that you choose. This is often the downside of receiving therapy via the NHS, in that you do get what you’re given and have very little choice in the matter. One of the most helpful aspects of private therapy is being able to exert some element of ‘control’ (as opposed to powerlessness) in pursuing what you need. It is perfectly appropriate to contact a number of potential therapists and to ‘interview’ them to see whom you would feel happiest working with. This aspect of ‘choosing’ is very difficult for many survivors. It may feel ungrateful to turn someone down – “After all, shouldn’t I be thankful that they’re willing to help me at all?” – but you don’t have to make your mind up there and then. You don’t have to accept the first therapist who agrees to meet with you, and it is equally okay to change your mind after a few sessions. Being in control and being able to choose is a really important part of recovery, and if you don’t feel safe or able to work with someone, if they make you feel trapped or ashamed in a way that you cannot challenge, then it is okay to stop seeing them. Therapy is supposed to make you feel better, not worse! Too many people get ‘stuck’ working with someone with whom they cannot form a ‘working alliance’ because they feel that it must be their fault – for being relationally defective or ‘difficult’ in some way. But we need to accept that not everyone gets on with everyone, and that’s ok. A good therapist will explain this in the early stages and give you the freedom to work with them or equally to say that you don’t want to come any more. You don’t need to worry about hurting their feelings!

THE CHALLENGES OF LOOKING FOR A THERAPIST PRIVATELY

One of the realities of many dissociative identity disorder survivors’ lives is that due to trauma having had a profound effect on their ability to work and manage life, often they are at the lower end of the socioeconomic ladder. In other words, they don’t have much money! The benefits system is intrinsically shaming and is based on you continually having to prove your entitlement. This can infect a survivor’s thinking so that they do not feel entitled to therapy (especially if they are having to pay for it themselves), and they can feel powerless and without choice. People higher up the socioeconomic spectrum are generally more comfortable, through experience, with paying for services. They may pay for a cleaner, or pay privately for dentistry. They may engage professional services such as solicitors to buy or sell a house, and they are used to engaging tradesmen to service the boiler or replace the carpet. In short, they are more used to paying people to do things for them, and therefore more comfortable with expecting a standard of service and being valued as the customer or client. For some survivors, it can be difficult to transition into this mentality when paying for therapy: for some it is a new concept that they deserve a certain level of service, and that the therapist is not just doing them a favour by agreeing to see them. This should be the case even for a reduced fee or no fee at all; otherwise the survivor can feel in an unhelpful ‘one-down’ position that replicates old abuse dynamics.

Many clients struggle with a sense of shame and embarrassment in having to pay for professional help. Especially in an area such as counselling, it can feel ‘weird’ to have to pay someone to listen to you, and potentially to care about you. A helpful way of looking at it is that few counsellors make much money out of their work, because most of it goes on training, supervision, books, insurance and room hire, to name but a few principle costs. Especially with dissociative survivors for whom forced prostitution has been an issue, the exchange of money for ‘attention’ can trigger a lot of issues. For some it can be helpful to see the counselling fee not in terms of ‘buying attention’ but as a way of making it possible, by the provision of insurance and supervision and room hire, to ring-fence that time and the relationship to allow you to meet regularly. It is perfectly normal to struggle with this issue, and perfectly acceptable to talk about it at any point in the therapy.

When ‘interviewing’ potential therapists, it can feel as if there are ‘rules’ and it is difficult to know what the ‘rules’ are. One person asked me if it is okay to see someone for an initial session and go away to decide whether you wanted to continue. Of course it is! Choice and free will are essential foundations. It is okay to ask questions – any questions, and you can ask things directly and in some cases you will need to. For example, you need to ask about things such as the frequency and length of sessions (some people offer fixed 50 minute sessions, others an hour, and still others are more flexible and will work for longer if appropriate). It is also a good idea to ask about the cost and how payment should be made, what length and frequency of holidays the therapist takes, what qualifications and experience they have (particularly in working with dissociation), which professional bodies they are registered with (if any), what their approach to working with people is … and anything else that pops into your head! Direct communication is difficult for many survivors, and so if it is too difficult to ask face-to-face then at least pose your questions in an email. Counsellors will not be offended at you asking these questions; in most cases, they will be grateful.

In making your decision about who to work with, it is important that you take into consideration all of the parts of your personality (however distinct or ‘fuzzy’) and make the decision with input not just from your more thinking-based parts, but from your emotional ones too! There are parts that are likely to be hypervigilant and wary, and it is important to take on board what their ‘antennae’ are picking up. Sometimes it will be a case of reassuring them that their fears are unfounded; but you must also take very seriously what they are feeling, as ignoring their concerns will certainly be counter-productive in the long-term and may blind you to potential dangers in the short-term. Whatever qualifications and experience a therapist has, they are still fallible human beings and just because they are a member of a professional organisation does not guarantee that they are entirely safe. It certainly lowers the risk, but you should never trust someone on the basis of external data alone – trust takes time to develop and it is okay to be wary and to go slowly.

Many survivors have very understandable fears around what they will have to disclose about themselves in an ‘assessment’ session. Some feel that they need to tell the therapist everything about themselves in order to be ‘fair’ to the therapist. However, this is not the case. You need to strike a balance between respecting your own privacy, and especially your alters’ right to privacy and safety, and saying enough to ensure that the therapist is sufficiently informed about your needs and likely treatment path. If the therapist feels that they are not competent or sufficiently trained to work with you, they will say. But even if you don’t want to say anything at all, that is okay too. Again, you need to feel safe and in control. Many survivors blurt everything out, because they feel that if they don’t then they are somehow lying or being deceptive, only for that unwarranted disclosure to cause problems for other parts of themselves as they then feel exposed and vulnerable. Therapists do not require a full life history in the first session, and especially where trauma is concerned, it is not wise to start down that path until there is enough safety in the relationship to keep things stable. Therapists working from certain schools of thought (eg psychodynamic) will place more emphasis on past events, whilst others (eg Gestalt) may focus more on how you are in the ‘here and now’. It is certainly therefore not essential for you to disclose an entire life history, which can be a relief for many whose histories are either traumatic or muffled by amnesia.

There is a wide range of opinion about how to work effectively in clinical practice with dissociative disorders. Some people believe that you should work only with the presenting ‘adult’ and that alters or parts should be dissuaded from appearing, as it is felt that this reinforces the dissociation and is unhelpful therapeutically. Carolyn’s two therapists have never taken this line, and I believe that it has been evidently helpful for her to have a place where each and every part of her is welcome and valued. At the same time, her therapy has also worked to strengthen her as the core ‘adult’ and to encourage her to take responsibility for her recovery and for all the dissociated parts of herself. This is not an easy balance to strike and it hasn’t always been done perfectly! But overall the extent of Carolyn’s recovery is testament to the successful approaches both her therapists took with her, even if they at the time felt that there was an element of ‘white water rafting’ and even ‘the blind leading the blind’! If you feel strongly that you want your alters to participate in therapy (and not everyone does) then obviously it is important to establish with potential therapists that this is how they work. An open-ended question such as “What would you do if one of my parts came out?” is a helpful way to establish where a therapist is coming from without it being a leading question!

For some people, finding a therapist just ‘happens’, as someone is recommended to them or they find their details almost by accident. For others, it is a long, painful task with many discouragements. But the key is to keep looking, and to keep trying. Even seemingly insurmountable obstacles, such as a lack of money or transport, can be overcome over time or through asking the right questions of the right people. “Not yet” is a good stance to take when faced with an obstacle: “It’s not yet possible, but I’m going to keep on trying.” Certainly the benefits of long-term, individual therapy are worth waiting for. If the NHS is able to provide that therapy, then all well and good. But no-one should feel that that is their only option. We know only too well that there are hundreds if not thousands of therapists in this country who are passionate about what they do and are willing to work with people in the most extreme of circumstances, because they want to see people recover. Help is available, even though it may sometimes be hard to find. Don’t give up!