There can't be too many things more deflating than to finally reach the office of the person you are counting on to help you survive and put your life back together, and be told s/he doesn't "believe" in what you are seeking help for.

What? How does someone not "believe" in a diagnosis someone else said you had? If you break your leg and go to the ER, is some orthopedist going to tell you they don't "believe" in fractures?

Before you give up on the therapist completely, or decide you must not really have DID because it doesn't seem to exist after all, there are some questions to ask that may help things make more sense.

WHAT DOESN'T THE THERAPIST "BELIEVE" IN?

There definitely are therapists who believe that the condition Dissociative Identity Disorder (DID) does not actually exist. However, over the past twenty years or so, the mainstream of the psychiatric and psychological professions have reached a general consensus that it does exist. The great majority of therapists, and virtually all of the recognized authoritative references consider DID to be a real diagnosis.

The Diagnostic and Statistical manual (IV edition, Revised) lists DID and other dissociative disorders. This manual draws upon committees made up of leading psychiatrists from around the country, and any controversial diagnosis is subject to extensive debate and must have a recommendation from the committee before it is included.

Both the American Psychiatric Association and American Psychology Association recognize the diagnosis. Index Medicus (the world¡¦s largest and most universally accepted database of clinical articles published by journals accepted as scientifically valid) includes Dissociative Identity Disorder as a major subject heading.

The Kaplan and Kaplan Textbook of Psychiatry has an extensive chapter on Dissociative Disorders including DID. This book is generally considered a leading text in the field.

Reviews of the literature published by researchers in the field have not produced any scientifically valid studies that demonstrate the disorder does not exist.

It might be helpful to ask your therapist if they are really stating that the diagnosis does not exist and that all of the groups recognizing it are wrong, and your therapist personally happens to be right. If s/he says that is exactly the case, it would seem reasonable to ask on what research or experience they base their unique understanding.

It is more likely that your therapist will concede that the disorder does in fact exist, but that it is rare, or that you don't have it.

WHAT IF THEY SAY YOU DON'T HAVE IT?

All good therapists should make their own evaluation of a new patient, review the existing information, and talk at length to the person to make their own determination about what problem they believe the person has. This is good practice. Many of us were mis-diagnosed for years.

However, doing that (i.e., a careful and complete evaluation) is totally different from making a blanket declaration before therapy has even started. If your therapist tells you that you don't have DID, it should only be after they have completed a fairly thorough evaluation and gathered specific information that makes a different diagnosis more likely.

If they haven't, you could ask why they would reject one diagnosis and insert another before they had any information to base it on. If they have done an evaluation, then they should be able to explain what specific features of DID you don't exhibit, and which features of their alternative diagnosis you do.

Some therapists may refer to the fact that DID is "over-diagnosed" or that it is a rare disorder, or that it has been an "in" thing for a therapist to come up with and it's done way too much. All that may be true. So? Regardless of how common or how rare a condition is, people have it, and when they are evaluated, the therapist can't simply say that DID isn't very common so therefore the person doesn't have it. That goes against every standard of practice there is.

WHAT IF THEY DO AN EVALUATION AND CONCLUDE YOU DON'T HAVE DID?

There are two possibilities: you may, in fact, not have DID, or, you do and their conclusion was not the clinically correct one. DID is a complex condition, and it is entirely possible that two competent, well-meaning therapists could reach different conclusions about a specific person. Once again, however, clinical diagnosis is based on signs and symptoms, and a therapist should be able to support the diagnosis they make and explain why a different diagnosis is wrong.

As a patient, for whom an extremely important opinion is being presented, you have every right to ask for a detailed explanation, with the opportunity to ask as many questions as you want. It is very hard to do this. All of us tend to be intimidated by authority figures, and all of us have problems accepting the diagnosis ourselves. Many therapists may attempt to brush off concerns like this. But this is your life. If the diagnosis is wrong, you will not get better because the therapist will be treating the wrong thing. Somehow, try to find a way to make this happen. Bring a friend. Ask for a second opinion. Anything that might work- you really should be totally convinced that a therapist's diagnosis and treatment plan are the right ones.

WHAT KIND OF THINGS MIGHT A THERAPIST SAY IS EVIDENCE YOU DON'T HAVE DID

Probably the most common thing you will hear is that repressed memories are not valid. There are two important facts to consider about this issue.

First, recovered memories are not an essential part of the diagnosis of DID. Many patients have very good recollection of what happened to them in their childhood, as well as court transcripts, external corroboration, and other witnesses. None of the four required conditions of DID involve that memories had to have been repressed.

Second, there have been no scientifically valid studies documenting the lack of reliability of repressed memories, and several that have confirmed they do exist. This doesn't mean that there is no such thing as an adult either believing or saying that things happened that actually didn't. Of course that happens. And it is also true that some therapists encourage or lead patients to certain behaviors that don't originate in the patient. That is true for any diagnosis. There are many cases of people who agreed that yes, they were having hallucinations, or yes they thought they would kill themselves after extensive prompting and encouragement from a mental health professional when in fact they did not. That doesn't mean that either one of those doesn't exist. It simply gets back to the same basic truth that to work with a patient effectively, a therapist must carefully and thoroughly conduct a full evaluation and objectively arrive at the most likely diagnosis.

A study published in 1994 in the journal Consciousness and Cognition; Williams LM, described a study in which 129 women who had emergency room medical records documenting childhood sexual abuse were contacted 17 years after the ER visit and interviewed. 38% did not recall the abuse at all, and an additional 10% said they had not remembered it until they had reached adulthood. Dr. Elizabeth Loftus, a leading member of the False Memory Syndrome Foundation and one of it's scientific advisors published a study in the 1994 Psychology of Women Quarterly (18:67-84) in which she concludes that about 19% of women sexually abused as children repress those memories as adults.

It is true that a belief or image that we might believe is a memory of childhood does not "prove" that it absolutely happened exactly that way, or that any symptoms we might be having must be from DID. But it is equally true, and there is no logic or evidence to support otherwise, that the difficulty in recalling trauma from the past in no way invalidates the diagnosis of DID.

You might also be told you actually have "Borderline Personality Disorder" or some other diagnosis instead and told that you fit the description of that much better. At your local public library ask to see the DSM-IVR (which lists and describes all the psychiatric diagnoses) and look up the one(s) your therapist believes you have. The symptoms and presentation are clearly described in understandable English. If you don't see where they apply, bring the book to therapy and ask which of the criteria the therapist thinks you have.

WHY WOULD ANY THERAPIST NOT SIMPLY ACCEPT THE DIAGNOSIS

Assuming that it really is accurate, why would a therapist not accept that you have DID? There are several reasons:

[1] DID is a complex disorder, that has only recently been fully recognized. It was not taught much in the past and is generally taught in a somewhat limited way now. While not rare, it is not a common disorder. Thus, many therapists have not had experience treating and diagnosing DID. As with all conditions in psychiatry and medicine, clinicians tend to favor the problems they are better trained in. This is understandable, but if a serious question arises, it is their obligation to consult with someone with more expertise.

[2] DID has been extensively tossed around in the popular press, on TV and on talk shows. It is usually presented as an adversarial situation involving lawsuits, extreme claims by the patient (as compared to the great majority of people with DID) and therapists may be wary of getting involved in what they perceive as a very controversial area. Many of us have that problem too. But the fact is made-for-TV movies are not how a diagnosis should be made. I would far rather not have a disorder that elicits such widespread condemnation and disbelief, but I do have that disorder. I can't choose an easier one. Neither should a therapist.

[3] For whatever combination of reasons (probably the most important being that DID really is hard to diagnose precisely because a person does hold different views of reality at different times) the average time from the appearance of symptoms to the actual diagnosis of DID is seven years. Like some other disorders, it simply happens to be a hard one to diagnose early in the condition. The great majority of people currently diagnosed with DID have had at least one or more previous different diagnoses made of their symptoms.

SO WHAT DO YOU DO WHEN YOUR THERAPIST SAYS "I DON'T BELIEVE IN DID"?

It really all comes down to this in the end: do you have it or not. The widely-accepted and well-validated way to identify someone who does have it is:

dissociative identity disorder (DID) One of the dissociative disorders in DSM- IV. There are four diagnostic criteria:

„h The presence of two or more distinct identities or personality states

„h At least two of these identities or personality states recurrently take control of the person's behavior

„h Inability to recall important personal information that is too extensive to be explained by ordinary forgetfulness

„h The disturbance is not due to the direct physiological effects of a substance or a general medical condition.

If these are the symptoms you are having, in order to get better, you need to be working with a therapist who recognizes and knows how to treat DID. If the therapist does not have experience, there are many sources of consultation and information that can assist a therapist. In the best situation, your therapist will consider the current thinking in the field and be open to working with you in treating the DID.

If the therapist simply refuses to accept that there is such a diagnosis, or that you have it (without having really evaluated you) there may be things that the two of you can work on in therapy that do not directly involve DID. Most of us have other conditions besides DID, and they are certainly important to treat, and therapy can always be of some use in understanding and having better control of your behavior even if it is not oriented towards a specific condition. However, it would seem pretty essential that the therapist would respect your belief that you have DID and for you to consider that at some point further treatment of another type may be necessary. In the Journal Dissociation (Vol. VI, No. 2/3, 1993), Kluft describes a series of over 200 patients who were in treatment with therapists who had different approaches to the patient¡¦s history of having been diagnosed in the past with DID. In the group treated by therapists who totally discounted the diagnosis of DID, every patient retained all of the symptoms and features of DID over a number of years of treatment. In contrast, 83% of those treated by a therapist providing treatment for DID had significant improvement.

One last caution- there is nothing special or superior about having DID. There are many other disorders that one can have, each of which is only best treated when it is accurately recognized. There is always the possibility that you have another disorder, even if your symptoms seem suggestive of DID. If your therapist seems to understand DID, and would not avoid that diagnosis, but genuinely feels you have something else, it is important to listen to their reasons, and consider that perhaps they may be right. The goal here is not to advocate for DID, but for an accurate diagnosis, so you can get properly treated and get better.

In the end, those of us who have this disorder know how painful and difficult it is. What we want is to receive the best available treatment so we can recover and move on with our lives. In the current field of mental health, the best available treatment means that someone who has DID is treated for the DID. That's certainly not too much to ask, and in fact should be a basic right for any of us. Only you know what you experience inside, and only you have to live the rest of your life, so only you can ultimately decide what treatment to accept. Hopefully, this article will at least make it clear that you are not in a minority, and you are not claiming to have some bizarre, generally discounted condition. I hope very much that you will be able to find the treatment that can help make your life better.

© John M. is a recovering survivor with DID.