I have been busy again today over at Dissociation Link, working on making the pages more informative and easier to read. The Resources page there is in much better shape now and frankly kind of puts my own to shame! (update; not anymore!) I’ve also uploaded another free trifold brochure called Introducing DID.The longer I’ve been involved in mental health, the less interested in the ‘top level’ diagnosis I’ve become. I’m more interested in what we can safely diagnose about ourselves – we know if we hear voices, feel anxious, have nightmares, or suffer compulsions. We might not know the clinical terms or why or what to do about it, but we can self-identify this stuff and go looking for supports. (not that it’s always this simple – took a long time to work out what was going on for me) What’s more, if we don’t get so hung up on the diagnosis, we can share resources and information a lot more easily. Otherwise, people with the schizophrenia label don’t get to benefit from what folks with the eating disorder labels are learning about stress management and relationship developments, for example. Not to mention that the way disorders are classified is often pretty arbitrary; they are syndromes, collections of symptoms and experiences that seem to cluster for many people. For a diagnosis of Borderline Personality Disorder, 5 of 9 possible symptoms must be present. That actually means that 2 people with the same diagnosis of BPD may only share a single symptom in common. The definitions of the eating disorders have become so narrow that most people with an eating disorder do not fit into any of the categories but are instead given the pretty meaningless diagnosis of an Eating Disorder not otherwise specified.
The diagnosis of Dissociative Identity Disorder (DID) requires high levels of dissociation in two areas, identity and memory. People who only have high levels of dissociation in the area of memory get the diagnosis of Dissociative Amnesia instead, but people who experience high levels of dissociation in identity only get stuck with the Dissociative Disorder not otherwise specified label. Why? Multiples who start out DID but go on to develop more co-consciousness would actually have to transition label over to DDnos. In practice this doesn’t happen because the label DID has come to be synonymous with the concept of multiplicity, and the whole point of labels is to communicate a shorthand about what the person is experiencing. As a result, a lot of what we think we know about multiplicity, we know only from the extreme end of the spectrum, from people who exhibit high levels of dissociation in two specific areas. This does not capture or reflect the experience of many people who experience multiplicity with lower levels of amnesia or in a less extreme way.
This rather resembles the development of knowledge about schizophrenia – originally our entire understanding of the condition was based on the observation of people in psychiatric institutions. Now a much broader picture is emerging – it turns out that many people exhibit only mild symptoms. It turns out that some symptoms, once considered to be sufficient for a diagnosis of the whole bundle of experiences and deficits that make up the schizophrenia label don’t actually go hand in hand with everything else thought to be part and parcel of the condition. For example, there are many voice hearers who meet no other criteria for a diagnosis of schizophrenia. Voice hearing turns out to be common, and not necessarily associated with any of the other symptoms of schizophrenia.
Schizophrenia as a diagnosis is being enthusiastically questioned all over the world, not least because people seem to do better without the concept of having a life long illness. Capturing experiences like withdrawal and lack of motivation and calling them part of a disorder such as schizophrenia can mean that when someone experiences them they are ascribed to the condition instead of people considering whether they might be the result of loneliness, misery, fear, and grief.
It is true that certain experiences do seem to go together, that you often find clusters of experiences. It is also true that most of us exhibit a slightly unique cluster, and diagnostic labels cannot possibly capture this. Many of us don’t experience a symptom or two from our own diagnosis, and many of us experience a symptom or two from a different diagnosis, that often goes unrecognised and unsupported. Or, even more depressingly, our cluster gets us several diagnoses and we become badged as complex cases and often feel deeply discouraged about our chances of recovery. Additionally, our unique cluster changes over time, due to growth, stress, better coping, processing, new experiences; or even day to day depending on how tired, stimulated, distracted, nourished, or content we are. This is normal!
Folks with DID often feel this stress about many diagnoses, because the condition so commonly co-exists with other disorders such as BPD, Posttraumatic Stress Disorder and other Anxiety disorders, Attachment Disorder, Eating Disorders, and so on. It’s common for people with DID to have difficulties with things like self-loathing, chronic suicidal feelings, shame and relationship difficulties, because these are common struggles for people traumatised in childhood, and most (not all) people with DID have been traumatised in childhood.
All of these experiences occur on spectrums, ranging from ‘normal’ human experiences to those are that quite extreme or disabling or depressing. Many of our diagnoses fail to capture this also precisely because they are giving a label to a condition at the extreme, disabling end of the spectrum, This is often for practical reasons such as ensuring that very disadvantaged people are able to access health care. There are many other problems created by this approach, not least of which is that we lose our spectrum and gain discrete categories instead. You are, or you are not. You have it, or you don’t. Part of what this does is scares the living daylights out of the folks who suddenly find themselves sharing diagnostic categories with people who are profoundly disabled by a severe form of the condition. Someone who experiences comparatively mild stress induced psychosis watches someone else with chronic psychosis and fears they are looking into their own future. The broader culture doesn’t even have the concept of mild psychosis.
The doctors often try to communicate this idea by using the term ‘pseudo-hallucinations’, the hallucinations you have when you’re not really having hallucinations. There’s no evidence to suggest that the mechanisms involved in ‘real’ and ‘pseudo’ hallucinations are any different, merely that in one the ability to reality check remains reasonably intact, while in the other the person loses this capacity and becomes delusional. Once again, these are not discrete categories, there is clearly a continuum between being able to recognise certain stimuli as hallucinatory and losing that capacity. Obviously, under the wrong circumstances it is easy to conceive of someone becoming overwhelmed and pseudo-hallucinations developing into the consuming, delusional kind.
In the diagnostic categories where severity is the marker of getting the diagnosis, such as Posttraumatic Stress Disorder, we cut off a whole lot of folks who struggle with these issues in a less severe form. (assuming for a minute that people are only given accurate diagnoses which is a pretty ridiculous premise in itself, I realise) All those with moderate struggles around flashbacks, avoidance, and chronic fear have to fend for themselves, and the opportunity for these two groups to meet and share and learn from each other is very rarely offered. This approach cuts off those who are deeply struggling, from those who share the experience but are not as overwhelmed by it. This kind of peer support is incredibly powerful.
So, I have a brochure called Introducing DID, because that is the kind of thing people are putting into search engines and the language our health professionals are familiar with. But I am frustrated at all the people living in the shadows of this diagnosis, not quite fitting for one reason or another. I am also repulsed by articles and books that talk about ‘pure’ DID, the ‘gold standard’ of DID, and the continual emphasis in written material that DID is the most severe form of the dissociative disorders. If one person is a ‘pure’ DID and someone else doesn’t quite fit the diagnosis, what does that make them? An impure DID? Half-caste? Mudblood? How the heck can a disorder even have a gold standard? And what do we even mean by using the word severe about DID? Do we mean that people with severe dissociation in other areas of their lives aren’t as disabled by it? That they don’t suffer as much? Do we mean that it’s harder to resolve? Where’s the evidence for these ideas? Why is everyone else in the dissociative diagnostic box left feeling as though their struggles and difficulties don’t count? There are people with significant dissociation in identity who are profoundly incapacitated and in chronic pain. There are others who are not even aware of their multiplicity and function in a healthy and unobtrusive way. There are people who experience the most distressing, abusive and overwhelming voices. There are people who’s voices are comforting, amusing, and restorative. I’m not all that interested in DID, I’m interested in dissociation in all it’s forms including multiplicity.
We need to hear more of these stories. We need to recapture our shades of light and dark, the depth and complexity of these experiences. We need to be able to trace our spectrums all the way along their length and link together all those who have so much to offer each other. We need to work on finding all the common ground instead of working on dividing our experiences and our pain into smaller and smaller categories, more compartmentalised and disconnected from each other. We need to speak about experiences and suffering in ways that don’t take away a voice and a sense of legitimacy from those who don’t quite fit the labels we’ve created.
This was going to be brief post, back when I started! Oh well. Apparently I had things to get off my chest. Soapbox packed away, on with my day! The last performance of Cracking Up went well tonight, I got to meet some new people and was given lovely compliments about my work, which I have tucked away in the hope that later I will be able to take them in. I have progressed over the three nights from feeling profoundly humiliated by my work to somewhat indifferent, to occasional small bursts of pride. So hooray for me. 🙂 I have also washed the dog, hung the laundry, eaten three meals, and done a lot more work on Dissociation Link, and that I AM feeling pretty proud of myself about. Hope you had a good weekend too.
Sarah K Reece 