Who makes DID a valid diagnosis?

This is going to be a rant. I offer no apologies for this fact, nor offer any reasons other than the ignorance of others and our current level of switching. I’d like to acknowledge the work of Emily, Camigwen and David when I write this, as their blogs and responses have helped to stir questions within this system that we needed to address.

Our questions include:

  1. Why do people not believe in a diagnosis that has been proven over time?
  2. Why would people want to fake such a disorder?
  3. What within this bodies past would cause such injury to the identity that it caused dissociation to become a disorder?

I consider that all of these questions come from one:
Who or what makes DID a valid diagnosis?

As this is our blog, I’ll concentrate on whom and what makes DID valid for us.

Is it the fact that we refer to this body as the collective terms “we”, “us” and “the body”?
No, this could be a learned behaviour that comes from some bizarre need to get attention through faking such a disorder. We are intelligent, this has been shown in IQ tests and our ability to get A+ grades at the Masters level, so remembering to use these ways to address the body would be easily done.

I’m told that when we first went and saw the new therapist that our fear of referring to the body as “we”, “us” etc was so high that we avoided saying any personal terms. Which worked to the point where the therapist asked us why we weren’t using any of the “I” terminology? Her observation annoyed those who had been present for the initial interview. But it also gave them hope – she may be able to help us unravel this mind and sort out what is occurring.

This concept is further complicated by some of us using the terminology “I”, but it only referring to the part that is present. So while Sophie may say “I’m worried about … today” Aimee may say “I’m happy today”. So the context of the “I” is only for that part and only for their experiences. This has caused difficulties when contacting crisis lines, as it is usually Sophie who calls, but she is never suicidal and never self-injures. So the crisis line worker hears a rather shy voice that is able to communicate that there are several different suicide plans and that there is a need for help – but the person asking for the help has a consistent speech pattern, is worried and fearful but is not obviously suicidal. What they don’t hear is the states that are totally devoid of emotion and have the suicide plans. We are unable to get them to communicate with the crisis lines as there is an inherent danger that they may be able to carry out the plans, or they just don’t want to reach out for help.

Having discounted basic terminology, what about the symptoms that we experience? Once, while being assessed for release from sectioning under our Mental Health Act, we were asked to list our symptoms. The list includes derealisation, depersonalisation, dissociation, sleeping problems, anxiety, hypervigilance, hypovigilance, flashbacks, nightmares etc. The assessing resident response was that everyone experienced that, so what made us so special?

So do those symptoms make us special or different? No they don’t. They do however mean that at times we are unable to carry out the normal activities that other New Zealanders enjoy. It means that at times we react oddly or badly to triggers. It affects nearly every aspect of this life – from doing the shopping, to intimacy, to household chores.

We don’t call attention to these symptoms, and are rather stunned if someone around us notices that we do something slightly differently from everyone else. As we are the only ones who can truly see what is going on in this head, it is also difficult to establish whether the severity of the symptoms we have is consistent with having a dissociative (or any other) disorder. Possibly our symptoms are in the “normal” or usual range of experiences and we just can’t cope with them. Considering the amount of assessments we’ve been subjected to over the last three years, it’s become obvious that we’re either a very good actress, or there is some form of disorder occurring.

So should we believe the psychiatrist, clinical psychologists and therapists that we’ve seen? It would be easy if they agreed. We’ve had experiences where we’ve switched in front of our first therapist, she even asked what had happened – according to her we were still physically sitting in the same place, but it appeared as if we’d moved away from her. This was just a switch from the softer Sophie, to the older and more confident Management. We’ve been told that the anger the Frank shows is reason enough to be sectioned under the Mental Health Act. We’ve been told that we have Borderline Personality Disorder, DDNOS, Depression, Anxiety disorders, Epilepsy; Bi-polar disorder… the list goes on. Some of these labels were put on our medical records in an attempt to get us assistance. What’s been interesting has been other mental health professionals responses to those diagnoses. Some look at the list and say that we’re typical Borderlines who are just attention seeking. Our clinical psychologists counters this by asking what attention we’ve enjoyed receiving over the last three years, the response is NONE. Our life revolves around trying to keep the appearance of “normal”. The ex-husband used this trait, and the dissociation to abuse us severely.

So if we can’t trust the mental health professionals, who are we meant to believe? Who do we look to for making the DID diagnosis valid for us?

The answer always seems to come back to one thing – Katie. Katie is our youngest active part. She is three, nearly four. She constantly follows Sophie and will only talk to her. She is precious, she is the reason many of us fight to keep this body alive and in one piece. She is not the identity of birth, but she is our centre. It makes us all stop instantly if Sophie says that Katie is “scaredy cat”. The worst sight ever is seeing her curled up rocking from the pain – either from memories or what is occurring within the system/life.

It could be argued that Katie represents an “inner child” that everyone experiences. This is again possible as we only have our own experiences; we don’t know what anyone else’s inner child acts like. However, we also have W, SO, S, M, A etc. These parts all have different memories, ways of interacting with the world (inner and outside), and mannerisms. W is calm, quiet, reserved, has issues with religion and is a Science whizz; while SO is anxious, must keep moving, constantly scratches the arm and talks rapidly.

So where does that leave us? In limbo. DID is not recognised widely in New Zealand. We’ve never been formally tested for any of the dissociative disorders, and in some respects it would be pointless to do so. We’re intelligent; we would be able to skew the results of the tests if we wanted to. So all we have is our collective experiences which seem to add up to DID in the eyes of many of the mental health professionals we’ve seen. What it hasn’t done is given us hope. We’re still struggling to find a therapist who can help us. We try to express our thoughts, feelings and experiences through media such as YouTube and get told that what we’re experiencing is delusional and we need to accept that delusion in order to move forward.

All we know is that we need help. We are becoming lost in the dissociation. Our fronting personality for many years has gone to sleep. We’re struggling to find a way to make this life work with the parts that are here and functioning. We’re asking parts to be up front who have never had that level of exposure and sometimes it doesn’t work. Just recently one of the women at work asked us if we had multiple personality disorder. That gave us all a shock. We managed to laugh it off, but it shows that our ability to hide as developed cracks. We need to repair those cracks rapidly.

Sorry for the length of this post. I rarely am here, so wanted to raise questions for the others to see.

Take care.
Be well.


10 thoughts on “Who makes DID a valid diagnosis?

  1. An interesting post. Its got me lost in thought. I wonder if movies play a part in making people not believe. There are so many films relating to multiple personality disorders and its usually related to negative things. Perhaps seeing this extreme enactment in films leads people to believe that its the stuff of fairytales. I don’t know, but those are some of my thoughts anyway. Hope you’ll be online soon 🙂

  2. Thanks Amy…Movies do play a huge role in the perception of DID. As movies are made to produce a profit, it’s always going to slant the angle that the storyline takes to the more sensational. It’s just frustrating that we’re having such a hard time finding someone who can help us heal.Take care.

  3. Ah, sweetie — so hard to read this; I wish I could bring you over here and give you my therapist. While reading, I had an incredibly bizarre thought that I’m going to share with you. Since treatment is difficult to find in NZ, I wonder whether there might be a dissociative disorder specialist elsewhere in the world (like here, for example) who might be willing to work with you via webcam/Skype. It wouldn’t be anywhere near as effective as in-person sessions, but I was wondering whether it might be better than working with the wrong therapist, since this disorder is so delicate, so complex, and so easy to exacerbate with inappropriate care.This is the website where I found my therapist: http://www.isst-d.orgThere's a resource list for finding a therapist, and when I needed an email for someone on the list, I was able to get it pretty easily by Google searching them. Anyway, I wonder whether it would make any sense to contact someone in a time zone closest to yours, and see whether something creative could happen.Much love to you, dear.

  4. Thank you David…I’m not even sure which of us wrote this. I’m still unable to read the entire entry without dissociating.I’d never thought of contacting someone internationally. I tried contacting a DID specialist in Auckland to see if they knew of someone where I live, but they just knew of people NOT to see. I might try some Australian dissociative specialists and see if they can offer any hope.Thank you…

  5. FWIW — This morning on a private forum, I happened to run across a woman who does in fact conduct her therapy via Skype, and seemed to know a bit about it. She doesn’t have DID, but apparently the concept really does exist. I’d be happy to contact her and ask her some questions for you, or potentially put you in touch with her, if it would help. No pressure, of course — I just want to assure you that if there is anything I can do to lend a hand, please ask; I’d be honored.

  6. I keep trying to correct something I said in the comment above, and just making it worse … I need more coffee. *sigh*I realize that it kind of sounds like I said “apparently the concept of DID exists” whereas what I meant was that apparently long-distance e-therapy exists. Of course DID exists — as I know from way too much personal experience. 🙂

  7. Hope you enjoyed your coffee :)I’d be interested in finding out more about the possibilities. Whether she would be willing to talk to us – even as a one off. Just to talk to someone about how to move forward would help us greatly. We’ve never met a therapist who seems to know how to deal with the dissociation in a positive way.Our problem is that we know the theory behind healing, we just don’t know the practicalities. We can easily research the various theories, but don’t know how that looks or feels. So we’re unsure if we should be feeling this defensive when our current therapist is trying to encourage an integration after 16 sessions. Maybe it is just us putting up roadblocks against change?We don’t have Skype, but if she would be prepared to answer a few of our questions via email it would be appreciated.Thank you for this David…

  8. I just realized I was confusing in my comment, for which I sincerely apologize — the person I’ve found is a client, not a therapist, but it’s still a starting point. I have a message in to her to ask how she found her e-therapist … and I also have an email in to my therapist to ask whether she knows anything about this modality, and if she has any useful resources. FWIW, Skype is free to load onto your computer … if you have microphone/headphone capacity, it’s very easy to use. You do need a high-speed cable or DSL connection.I’ll let you know what I find out, and again, I’m sorry for the ambiguous wording earlier … I wasn’t quite awake.

  9. Hi David,It was also us hoping that there was an answer to some of our questions as well… No harm done.We’d still be interested in hearing her opinions on whether it’s helped conducting therapy this way and why she decided to use this method. If you’re comfortable handing on our email address it’s castor_girl[at]yahoo.comOur problem with Skype is not so much the program, but rather that the only one of us that isn’t totally socially inept is Sophie. Sophie is very softly spoken so often is told she’s difficult to hear on the phone, it’s even worse through the computer mic.Take care…

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