Countering DID myths – we’re not all the same!

In my recent post Common DID myths, I spieled a stack of common misperceptions I’ve encountered that bug me as a person with DID. It got a lot of interest from people, with the odd misunderstanding or uncertainty about what I DO think about DID. To go through each point alone would be a huge post, but I can counter a bunch of them in easy to handle groups.

If you’re new to the topic of dissociative identity disorder, there’s a great, easy to read introduction here, or a shorter brochure version designed to be an easy place to start when educating other people – you can tailor it to your own experience by sharing the ways it does and doesn’t fit for you. I wrote these a few ago, back when I was starting out on my journey of being a peer worker coming out about having DID myself. Since then, I’ve learned a lot and my perspectives have changed in some ways. These days I’m far more interested in talking about multiplicity (an experience) than DID (a mental illness)… rather the way that that organisations like Intervoice talk about hearing voices instead of schizophrenia. Why? Because it takes the conversation away from the medical model. It moves us away from needing experts to tell us what is going on with ourselves. (not that collaboration with other people isn’t very helpful!) It moves us back into being the expert in our own lives, where our own opinions, experiences, and ideas matter. It stops pathologising all these experiences – did you know that a lot of people hear voices that are not distressing, cause them no harm, and that they have no other symptoms of schizophrenia?

Plenty of people with multiplicity have been diagnosed with DID or DDnos (which is the grab-basket diagnosis for people with major dissociation things going on who don’t quite fit into the diagnostic category of DID) and that’s great, and I work a lot in the mental health system where DID is what we talk about. But for me, it’s important to separate experience from diagnosis, and to remember that not everyone with that experience fits or identifies with the diagnosis! Read more about my thoughts on the relationship between multiplicity and the diagnosis of DID on Introducing DID Brochure and unplanned rant!

One the biggest issues with misunderstandings around multiplicity, as a lot of people pointed out, is the absolutes! Everyone with DID does this, or needs this, or feels this way, or recovers like this… So the first thing I do believe is this:

People with DID are not all the same

There are many spectrums within DID that vary widely from person to person, and also within the same person at different times. Some common ones I’ve come across are:

  • Degree of amnesia – some people have no idea what has happened when another part is out. Some people are aware of things while they are happening, or get updated after they have happened. This can be different at different times – I have a lot more amnesia when I’m stressed. It can also be different for different parts, some may always be aware, some may always be amnesiac within the same system. For more information see what is co-consciousness.
  • Obviousness of switching – for some people it is obvious when they switch, for others it is so subtle that only someone who knew them very well might be able to tell. My switching would be obvious if I allowed it to be a lot of the time, but years of keeping it hidden mean most people do not pick it. Some people are more sensitive to subtle switching than others.
  • Number of parts – this can range from just two, to hundreds or more.
  • Nature of switching – some multiples switch all through the day, others only very occasionally, and some people never switch, but they talk to their parts and hear them in their mind, or see them as people outside of themselves.
  • Degree of internal control over switching – some multiples can chose which part is out, others have no control over this. Sometimes some parts have more control than others, or can set up triggers to deliberately switch – eg. I will wear certain clothes and bring certain foods and smells with me to make sure my researcher stays present during exams.
  • Degree of fluidity – some multiples have very fixed systems with, say, 5 members who have been there for years and have not changed at all in age, self identity, or roles during that time. Others are more fluid, they are difficult to learn about as they are constantly changing with new parts forming and old ones going away. Neither of these is necessarily better than the other – fluidity can be chaotic, but rigidity can prevent growth.
  • Other diagnoses – people with DID may have other physical or mental illnesses which will change how they experience life.
  • Degree of impairment – some people with DID are extremely unwell and struggle to function, perhaps spending a lot of time as inpatients, while others live and work unnoticed in the community, perhaps with no one around them aware of their condition.
  • Degree of separateness between parts – some people’s parts are closer to each other in the sharing of psychological space, they can do things like share tasks in the body (one running the mouth and eyes while another chops food for dinner), merge and blend skills, feel each other’s emotions – eg. a content adult is enjoying their evening, until they start to be disturbed by a growing feeling of anxiety that seems alien to their own mood – because an inner child is distressed by the movie and their feelings are blending across, or influence each other mentally such as giving or taking away words in their mind, showing images to each other, and so on. Other people have parts who are completely separate and share no common psychological space or resources. Both within the same system is possible too.
  • Polyfragmentation – some people with DID have mini systems within their system, or have parts who have themselves split to form parts of their own.
  • Degree of diversity within the system – systems can form with parts who are extremely similar in personality and nature, or extraordinarily different. One system may have 5 parts all called Geoffrey, all somewhat shy, introverted guys who hold different memories and range in age between 35 and 50. Another system may have highly diverse parts who identify at different places across a spectrum of gender, sexual orientation, age, ethnicity, species (some people have parts who identify as being animals, spirits, fae etc), and so on.

DID is about identity – it is therefore extremely individual in the way it presents and is experienced!

This is contrary to all the myths based on absolute assertions, such as

  • People with DID can’t work.
  • Everyone with DID has an inner self helper, an inner protector, an inner wounded child (and so on).
  • People with DID are manipulative.
  • People with DID can never control their switching.

These myths are often perpetuated by people who have had some kind of contact with the multiple community, rather than the set I come across when speaking to people who have never heard of DID. Humans do seem generally to be wired towards absolutes, and you’ll find myths based on absolutes abound in most areas of human endeavour. All lesbians are vegetarians, all Indians like cricket, all domestic cats hate water. They are true some of the time, or even lots of the time, but they do not capture everyone’s experiences.

What particularly frustrates me is that so many of these myths are embedded in our resources. Throughout many of the books about DID, and the frameworks about working with DID given to us by the ‘experts’ are absolutes. These people should know better. I’m sick to the teeth of reading books that tell me things like all people with DID have an inner self helper (a very useful type of part who knows a lot about everyone in the system). What they actually mean is all people with DID I’ve worked with have an inner self helper or, if I’m being particularly cynical; having absolutes makes me less anxious about working with people so I strongly encourage all my clients to present their DID to me in a way I’m comfortable with. That is harsh – as people we are often unaware that our absolutes don’t include someone until that someone tells us. The problem is that when a whole stack of people agree on an absolute like this, it creates a culture where people who don’t fit are not invited to share their experience. If that culture becomes rigid and deeply embedded, then people who don’t fit will be ignored and excluded even when they do.

I get angry about this because I work with too many people who are stressed and scared that they don’t seem to be fitting the frameworks they’re reading about or that their therapist is working from. Frameworks are really valuable!! They give us direction when we feel lost and hope when we feel overwhelmed. But I believe that holding any framework too tightly, or trying to force a framework into a situation or onto a person when it isn’t fitting and when it’s creating instead of alleviating stress is wrong and harmful! Some people don’t get stressed, they just exit the supports. They maintain their own sense of identity and truth, alienated from the community and unable to access the services if they ever do struggle. This is not a good thing.

Lastly, I think some of these myths about absolutes are basically Black-swan fallacies. “Every swan I’ve ever seen is white; therefore; there are no black swans”. I read a lot of these in the literature. All DID is caused by trauma. All DID is formed before the age of (pick one) 10, 8, 7, 5, 4, 2. All people with DID need extensive therapy. People with DID never spontaneously integrate. These are based on the experts not having witnessed anything else – but that does not mean that anything else isn’t possible. In fact, considering that you are not permitted to self identify as having DID (because that is self diagnosis and therefore lacks validity, a claim I’d be more comfortable with if I believed any form of diagnosis had much in the way of validity), then research is never going to include people who haven’t had contact with the mental health system, so there is actually no way to hear about things like people living with DID who don’t use therapy. In some cases, the limited way the diagnosis of DID has been constructed contributes to these fallacies – for example there’s a case study in Trauma and Recovery by Judith Herman (Chapter 4, The Syndrome of Chronic Trauma) about a woman who was a political prisoner, who describes a degree of internal splitting as an adult – “My second name is Rose, and I’ve always hated the name. Sometimes I was Rose speaking to Elaine, and sometimes I was Elaine speaking to Rose. I felt that the Elaine part of me was the stronger part, while Rose was the person I despised. She was the weak one… Elaine could handle it.” I’m not saying Elaine developed DID, but this experience of parts, some degree of multiplicity, gets excluded from conversations about DID, and I think we need these.

These types fallacies are being exposed in the field of psychosis as space has been made for more people to join the conversation. So much of what we think we know about hearing voices is based upon the experiences of people within our mental health systems. Many people who hear positive, helpful voices or only briefly hear voices do not tell anyone. Why? Because of absolutes such as ‘everyone who hears voices is mentally ill’. They’re not invited to the party. If they do turn up, they’re offered a label, a diagnosis, a straightjacket, and all their thoughts and ideas from here on out are delusional, unless they agree with their treating doctor, in which case they’re insightful. Through the work of mental health activists – both of the peer and expert kind, new parties have been created where people get invited to share and amazing things are being learned – like LOTS of people hear voices, many voices are not distressing, some voices only become distressing when people are counselled not to listen to them, and that different people find different approaches best.

If we keep talking about DID and multiplicity using absolutes we are excluding so much of the diverse experience and wisdom of our own members. There IS common ground – people with DID have parts – and generalisations can be useful: people with DID often get frustrated about having to explain our condition to everyone, people with DID feel scared and isolated when we don’t know anyone else with DID, people with DID want to be believed and accepted. I believe that people with DID are a highly diverse community, with many different experiences, ideas, understandings, and ways to live life most fully.

For more information see articles listed on Multiplicity Links, scroll through posts in the category of Multiplicity, or explore my Network The Dissociative Initiative.

8 thoughts on “Countering DID myths – we’re not all the same!

  1. Crap, how did I miss this? Dissociation or technical glitch, I’m not sure. Sorry Samira. 😦 Argh! I hear your frustration!! I think in some ways it’s easier to bear the pain of harm like overt abuse, we kind of understand the mathematics behind it – some nasty creep hurt us and so we hurt – than it is to bear the totally needless harm caused by otherwise perfectly ordinary people who contribute to widespread myths, stigma, and discrimination simply from ignorance. Being ‘mad’ or multiple in a world that is terrified of madness and doesn’t believe in multiplicity is incredibly difficult!

    It’s not that hard to just listen. Some people ARE listening, which is awesome, and there is hearing voices movement in America in some areas – many of the groups already have people who dissociate or experience multiplicity in them.

    I’m glad you’ve some of this blog helpful. I hear you, I believe you.

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    • No worries Sarah. Hahaha. I barely recall writing this although it is definitely something I would say. Thanks for believing and hearing me. 🙂 I really can’t wait till my state someday climbs aboard on the hearing voices movement. The nearest place I could find that had their groups was Chicago, which is 8 hours away from me via car. That’s not going to be much help. Lol. Ah well. Sigh. 🙂

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  2. “and all their thoughts and ideas from here on out are delusional”……

    I am so tired of dealing with the above issue, just because I’ve had delusions in the past, so many people in my life are now questioning my perceptions of situations. Sometimes even situations in which they were not there to witness them. It makes me feel like I have to question trusting my intuition when it’s telling me that something is off in an interaction I’ve had or a situation I am dealing with. To me that very accurate and intense level of intuition, that I’ve had since I was a very small child because it kept me safe in a lot of potentially violent and abusive situations, is so important. I hate the feeling now that I have had since having delusions, that I have to question everything that happens because those closest to me are, mostly from what I can tell out of fear because they are terrified of my having any symptoms of a mental illness and want to correct these symptoms for me. I realize a lot of that may also be because they care about me and want to decrease my anxiety, but what they are doing is actually increasing rather than decreasing that anxiety. I am also tired of people in the mental health field making assumptions about the DID diagnosis based solely on their own experiences, which often are rare or few in reality compared to living with it. The worst issue is the stigma and the denial of those in the mental health field who say that DID isn’t real. WTF? Why not? Is it so far fetched to believe that the incredible human mind and imagination of a child or even an adult in an intensely dysfunctional situation could split apart in dissociation and create alters to handle these situations? Then further develop those parts of themselves as they grow and change? It’s not like the people who live with this on a daily basis are able to control all of it. It’s not like we can just stop it from happening. Most of our lives are spent trying to reverse the trauma and dysfunction that caused it that still exists in our lives now due to how we were raised or how those around us dealt with the same trauma differently. If I hear one more person say that I should just forget the past and move forward and then I wouldn’t have mental health issues anymore, I’m seriously gonna burn the house down (that’s an American joke btw, from the movie Office Space – to clarify, I’m not literally planning on burning anything – hahaha). I have learned over the years because of other people’s reactions to my diagnosis/label of DID, that hiding it is the best possible way to go about functioning as well as I can in the world. It’s too hard, on top of what I already have to handle, to have to deal with people’s fear and stigmas out in society or even within my own f**ked up extended family. Unfortunately for me, because of this hiding of what’s going on with me, because my own family can’t even accept that I experience depression little lone a diagnosis of DID, which they would never bother to listen about long enough to understand, I have the added burden of seeming crazier than I actually feel that I am. Very frustrating. Sorry for the uncreative use of the same adjectives over and over in this rant. Sometimes it’s hard for me to be creative in my writing when I’m upset. Imagine. LOL! Anyway, thanks for writing this and for allowing me to rant about my feelings about it on your blog. I know there has to be others out there experiencing DID who also have felt this way or feel this way on a regular basis. I wish the US would go more towards the hearing voices movement in their way of dealing with all mental health issues. Instead they are just cutting funding for treatment and throwing people with these issues to the wolves if they don’t have private insurance. It’s sad. Be well and kudos to you for such insightful and helpful writing. It breaks down the stigma of having mental illness symptoms, at least for anyone who is willing to give it a chance to think about it differently, and that is the most helpful way to assist those that deal with mental health challenges in my opinion.

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