Don't Call Dissociative Identity Disorder a Disorder!?
Over the years I've heard many people advise dropping the word 'disorder' from dissociative identity disorder, citing
A) dissociation as a normal response to trauma, and
B) honoring subjective experiences as the primary reasons that it’s not helpful.
But the degree to which something is normal really has nothing to do with whether or not it’s a disorder. Disorders are referred to as disorders not because they're abnormal, but because they actively, regularly, and severely disrupt people's lives to such an extent that their ability to function is notably, even dangerously, compromised. And labeling a particular set of psychiatric symptoms with a particular psychiatric diagnosis is no more a call to ignore individual experience than it is to use labels like diabetes, hyperthyroidism, or influenza.
But Dissociation Is Normal!
It's true that dissociation is normal. It’s also true that dissociative identity disorder is an understandable response to chronic traumatic stress. That doesn’t change the fact that:
- I have $100 one day and none the next (which is actually four days later, only I lost three to dissociative amnesia) with no idea where it’s gone to.
- Living in my head is often like going to a busy shopping mall without the ability to tune out other people’s thoughts – loud, confusing, and agitating. (Imagine that for a minute. Mere words cannot convey how overwhelming it is.)
In other words, it doesn’t matter if people without DID have memory problems, trouble tracking money, or busy, restless minds. My symptoms add up to a disorder not because they're exclusive to dissociative identity disorder. On the contrary, I think most people experience mild to moderate dissociation in its various forms. No, my symptoms add up to a disorder because they disrupt my life so profoundly.
But the Word ‘Disorder’ Is Disrespectful!
I briefly saw a therapist several years ago who refused to call dissociative identity disorder a disorder, insisting that it’s a creative survival mechanism and a testament to creativity, strength, and intelligence. Give me a break.
Noses notoriously overflow with germ fighting mucus when head colds show up; but just because your nose is waging war against an upper respiratory infection doesn’t make that snot running down your lip any less annoying does it?
But I Don’t Like the Word ‘Disorder’!
Then don’t use it. Call it whatever you want. How about Suffered Overwhelming Stress as a Child but Found Interesting, Creative Ways to Survive? While we're at it, let’s call anxiety disorders Feeling Pretty Awful but Soldiering On Anyway and Discovering the Tenacity of the Human Spirit in the Process. And from now on let’s call Bipolar Disorder Super Depressed but then Super Energetic and Happy (So It All Evens Out, Yeah?).
All kidding aside, my point is simply that re-framing diagnostic labels to make them more affirming isn't, in my opinion, helpful. Diagnoses aren't meant to convey what it's like living with them, why we have them, or how we can look on the bright side. They're classifications for sets of symptoms that severely disrupt people's lives. Dissociative identity disorder is just one of many.
Runny nose photo by altemark.
Gray, H. (2011, September 26). Don't Call Dissociative Identity Disorder a Disorder!?, HealthyPlace. Retrieved on 2020, April 7 from https://www.healthyplace.com/blogs/dissociativeliving/2011/09/dont-call-dissociative-identity-disorder-a-disorder
Author: Holly Gray
Thanks for your explanation, it helped me to understand where you're coming from. In many ways, it's similar to my own situation, in that I go to work and live my life to the best of my ability. I suppose the main difference is that I see the negative experiences of DID as impacting on my life to a great extent. I also thought that what I experience was normal, but then I also thought the abuse I was subjected to was normal - although I knew it wasn't something that I would ever subject anyone else to, so just normal for me to be subjected to.
Forgive me if I ramble. I thought the blog was about calling DID a disorder. To me a disorder is a disabling condition that completely disrupts your life and makes it unliveable.
My intent was to explain that although we have DID, we live with DID, not suffer from it. I never knew I was different from anyone else. Like the woman from "Hoarders", I have made adjustments to my life to make it survivable. That, to me, is DID. Do we periodically "wake up" with cuts one of us made in a fit of frustration? Yes. Do we "wake up" with a rope around our neck? Yes. Do we hear screaming in our head? Yes. Do we find life intolerable and beg to get away because of the confusion or claustrophobia or anxiety or overwhelmingness of it all...sometimes only momentarily, because someone else steps in to make it doable.
On the flip side, do we, in uniform, stop you when you are speeding, go to war, teach your children, prepare your taxes, examine your eyes, ring up your groceries or prepare your food? One of us does. Did I miss my children growing up? Most of it. Do I have photos? I think so but I don't have a clue where. Are things out of control? Yes. And this is why I sought help... then I found out that this is not how other people live. Is it doable? Sometimes only barely. Are we going to roll over and accept disability? Absolutely not, but we will keep adjusting and adjusting and keep making it doable. And the kids will come out and play in the rain, chase the ice cream man, make mud pies, chase dragonflies and just make DID a great place to be because I can guarantee you that no one except those with DID will do these things at my age.
I hope this explains it. We are normal to us but try not to make it a problem. When life becomes a problem one of the others steps in. Castorgirl I'm sorry you're so miserable in your existence. Holly, I don't find DID a positive experience, we just don't know how else to be.
"To me a disorder is a disabling condition that completely disrupts your life and makes it unliveable."
I agree, with the exception of the word 'unliveable.' Natasha Tracy (author of Breaking Bipolar) has Bipolar Disorder. It severely disrupts her life. Yet she lives. Angela Gambrel (author of Surviving ED) has an eating disorder. It severely disrupts her life. Yet she lives. Not only are both women living, they are contributing to the world. Yes, psychiatric illnesses can and often do end lives. But you are living testimony of the fact that a majority of people with a mental disorder *live* with them, despite the chronic disruptions their illnesses create. And your 2nd paragraph, I'd like to gently point out, is not an example of a lifestyle. Veganism is a lifestyle. Coming to with cuts on your body or a rope around your neck, finding life intolerable and begging to get away ... is not a lifestyle.
One other point I'd like to make:
"Are we going to roll over and accept disability?"
Living on disability benefits is not rolling over. To put it bluntly, if you are getting up and going to a job most days, and doing it relatively successfully, then you do not have a disability that precludes you from working. Other people are not capable of that because they have a disability that makes it impossible. Not optional ... impossible. Sometimes disabled people are fortunate enough to find paying work that accommodates their particular limitations and strengths. But not always. And I promise you, the government is not in the habit of pressing money down our throats. People who receive disability benefits are not "accepting" them, like a freely offered gift. Most of them have had to fight for those benefits. Did you know that most first-time disability applicants are turned down, just as a matter of course? It's a pretty stellar weeding out process. You see, if someone is capable of working, they won't be able to stand living in abject poverty long enough to fight that decision. They'll get tired of being hungry and go get a job. Whereas those people who are quite literally incapable of working have no choice but to live on next to nothing, often for years, sometimes forever. If they finally do successfully win benefits, I assure you, they haven't "rolled over." They have fought for their survival.
I'm curious, if being DID is such a positive experience, why were you in a situation to be given a psychiatric diagnosis? I ask, as if you are happy with your life, why were you in that situation of seeing a mental health professional?
I'm glad you experience a life which appears to have little, to negative impact from DID. But this is not the experience of all of those with the diagnosis.
Almost every time I read your blog it shakes my terra fima. I always thought that not being able to account for that $100 was normal and that busy shopping mall in my head enabled me to see any problem from six different sides...a benefit that not all people have. When the suggestion of DID was placed in my lap several years ago it sure explained a lot, but continues to baffle me. A disorder? No. A way of life? Yes.
I still have trouble figuring out how people exist without "other personalities". Through the years I've realized how I've existed with DID and have just made adjustments to my life in order to make it doable where normal people have not had to make the same adjustments. Point is...I don't consider this to be a disorder. I work, I play, I marry and divorce just like normal people. When we are lucky we discuss it internally and move on. When we are not lucky there is time loss or the chaos called the shopping mall in my head screams at me and makes the day/week a bigger challenge than yesterday. I just never realized it is different from the rest of the world. Sometimes I feel sorry for the normal people...DID can be a great place to be.
I used to think there was some benefit to having Dissociative Identity Disorder too. I don't anymore and I now believe my positive outlook had more to do with me wanting to find the upside, than it did with anything genuinely positive about DID. But your description of some things sheds some light on the differences in our experiences, which may account for your view that DID is a way of life, not a disorder:
"I always thought that not being able to account for that $100 was normal and that busy shopping mall in my head enabled me to see any problem from six different sides…a benefit that not all people have."
Not being able to account for that $100 isn't necessarily ABnormal. Plenty of people have problems tracking their money. Some just don't have any respect for money and their entitled attitudes shoot them in the foot. Others are compulsive spenders and may, therefore, have trouble keeping track of how they spend their money. Still others just have never been taught to manage money properly. So is not being able to account for $100 indicative of DID? No. Is it normal? In some circumstances, like the ones I mention, yes. But again, this isn't about normal.
And the shopping mall in your head enables you to see problems from 6 different angles ... good, that suggests a lot of work on your part. Because severe dissociation can, and often does, have the opposite effect - I can't see problems from 6 different angles; I see problems from my angle, this other part sees it from theirs, etc. And I'm not privy to other perspectives. I'm privy only to noise I can't decipher, feelings I can't source, confusion. Your ability to look at things from a lot of different angles is awesome ... and if it's due to DID then I expect you've had to work very hard to get there. If it worked that smoothly for me, if my system's perspectives were that accessible to me, well, I might see the upside too.
"Sometimes I feel sorry for the normal people…DID can be a great place to be."
There's that word 'normal' again. ;) This isn't about normal. This isn't about abnormal. I saw an episode of Hoarders the other night. This woman's home was so packed with stuff she couldn't walk on the floors. At all. She opened her door, climbed up a mountain of stuff, picked her way along to a bathroom she couldn't use (she leaves the house if she has to use the restroom, takes showers at the Y), and the rest of the house, all of it packed to at least halfway up the walls with junk. She had one tiny area in her bedroom carved out, big enough for her to lay down in. Her daughters came to visit and one said, as she crawled through the house in shock, "This isn't normal!" And she's right. It's not normal. But that's not why this woman's behavior is a problem. It's a problem because she's miserable, but cannot stop. It's a problem because the fire department could condemn the house and she'd have no place to live. If she hoarded junk, and loved it, had no misery around it (of her own, mind, not other people's), was not in physical danger because of it, and felt in control of whether or not she kept things or discarded them, she wouldn't have a problem. She'd have an abnormal lifestyle, yes. But not a problem.
So it is with everything else, in my opinion. Normal has nothing to do with it.
What is a disorder to one person isn't a disorder to another. I believe the definition depends on it causing distress? So perhaps Dissociative Identity Distress? ;-)
Using the language has also helped me create a barrier between myself and the experience, as it has taken me a step away from the rawness of it. I suppose it has placed an intellectual veneer over something, and made it easier to dismiss it as being a problem. I encountered this over the weekend, where it felt safer to use the words within the text books, rather than the words which portrayed the emotional impact my experiences were having.
I'm afraid I haven't had your experiences in this area. First of all, no clinician has ever suggested that because I've educated myself about my own disorder I clearly must not have it. That's ... asinine, frankly. And disturbing. Clinicians should be offering psychoeducational information, in my opinion. The implication of what you described is, to me, that patients should either A) remain ignorant about their own disorder, or B) hide whatever learn, lest they be refused treatment. That's just ... well, like I said, asinine. Surely patients with diabetes are urged to educate themselves?
As for language creating a barrier between you and your own experience ... I've only had issues with that when I *don't* have the clinical language to describe my experiences. I am far less likely to dismiss my problems when I can identify what they actually are. That gives me a framework within which I can finally give voice to my feelings and experiences. I can't do that, particularly as someone who so chronically and severely dissociates, without reliable language to serve as that framework.
I have often said in philosophical circles that "To the insane, what IS sane, would be insane" - it's all relative to one's established idea of normal... which in no way means this idea is true, but to the one who has established it, it has become thier truth. Here enters the cause of all problems and what Einstein was inferring. We all can recognize that when we try to to do what is right, yet we didn't know what we didn't, and we act on this error we suffer a consequence- but when it comes to what has been accepted in the mind as true and error occurs we call it fate or bad luck, or living life on life's terms. We don't recognize those life's terms were established when we called X true and it wasn't true... more so because there are others who also agree in the established axiom.
For example [and very simple] years ago man discovered tobacco, it had some immediate "good" effects and the a world of smokers became "the norm" - after it had been established with long term [generational] use, negative effects started to creep into the picture. At first it wasn't known that cigarettes could be the cause, and those who suffered from cancer just had bad luck. Now we know that smoking is hazardous to your health and luck had nothing to do with the consequences. So it is the case with ALL consequences. Unfortunately it is directly related to the ones we call "good" [as was the case with cigarettes] - because we are pleasure seekers and pleasure we see as something necessary for our survival, we seek, over and over again, something that will accomplish this goal - it is until years after the fact that equal and opposite effects pays its dues to even out the scale that was placed out of balance from the original cause - the attainment of what is good or pleasurable that reaps its evil negative balance.
Cause and effect and equal and opposite effects are opposing forces because dissociation has displaced identity and we seek external solutions to an internal dilemma - without a change in the mind on the premise - man continues to do the same thing over and over - he just switches out the form or the means to do it - and pain and suffering (anger and depression) and chaos and confusion manifest repeateadly - the more it manifests -the greater the need to find a solution and each solution is like the one that caused the original problem - it is sad in a world of know-it-alls [science, religion, and philosophy] that few have come to the realization that man really knows nothing at all - and not only does he know nothing- but on everything he believes he knows sets him up for all that he suffers.
“To the insane, what IS sane, would be insane”
Yes, that's an oft-repeated statement of many. Personally I don't believe it's that simple.
" ... it’s all relative to one’s established idea of normal… which in no way means this idea is true, but to the one who has established it, it has become thier truth. Here enters the cause of all problems and what Einstein was inferring."
I can't agree that all of humankind's problems are born of ideas about what is and isn't normal. Nor do I believe Einstein was suggesting that. And again, "normal" has nothing to do with whether or not something is classified as a disorder.
Thanks for your perspective. :)
My life is clearly disordered, if I didn't see it as such, what motivation do I have to change? I'm appreciate that my mind chose dissociation as it's coping mechanism, but that doesn't mean that it's healthy. The extremes that I currently experience are very unhealthy. But, I know that with work, understanding and kindness, I can live a better life... one that is less disordered.
"To me, it’s problematic when the language used to describe my behaviour becomes more important than the behviour itself."
I *think* I agree ... but I'm not sure. For me, language is how I am able to give voice to my experience. And it's extremely frustrating to me not to have the words to convey my experience. I'm also pretty convinced that not having the language with which to describe things impacted my ability to get help even when it was offered. I believe that, had I had the words to explain things, doctors and therapists would have had a better understanding of what I was dealing with, and therefore would have been in a better position to treat me effectively.
So while technically I couldn't agree with you more - the issues are more important than the way I describe them - I wholeheartedly believe there's no way for me to get appropriate treatment for those issues when I can't describe them in a way that effectively conveys my experience of them.
I should probably mention that Tracy tells me often that I place too much importance on semantics. :) (She's wrong, of course, but still.)
"My life is clearly disordered ... "
YES! I mean, that's the bottom line for me. When people tell me they don't like the word disorder because it's really this great and amazing thing that they're proud of I think, 'You're right. You don't have a disorder. But that doesn't mean DID isn't one. It just means you don't have it.'
I have seen a lot of reframing of symptoms as diagnoses that I find disrespectful. Usually this is done in a joking manner and maybe I should have thicker skin. And I do think you wrote about this before.
For example, I have not heard anyone ever say, in response to someone complaining of a stomach ache, that "I think you have stomach cancer." Or someone complaining of a headache: "I think you maybe have a brain tumor."
But I have heard many people say, in response to someone not thinking clearly or being of mixed minds about a decision, "You're acting schizophrenic." Or "You have multiple personalities." Or when the recent NFL football player from the Miama Dolphins was diagnosed with Boderline Personality, there were many articles that wrongly said he had multiple personalities.
Not that these are necessarily related. They just came to mind when I read this post.
Yes, clinomorphism ... I did write about that. It remains the article I've gotten the most criticism for. Which surprises me. Mental Illnesses Aren't Punch Lines http://tinyurl.com/3qlmynz
Honestly, I don't see it as a thicker skin kind of thing. When people define indecision or moodiness as "multiple personalities" they're muddying the waters of public perception. And that's problematic. As an example:
I struggled with some pretty serious, dangerous depression most of my life before ever realizing it might be a legitimate problem that can be fixed. I genuinely thought I just had a bad attitude, or needed more exercise and a better diet. Or God. Or something. It's not that I hadn't heard of depression before. I had. It's just that I'd heard it primarily in reference to things that aren't anywhere near true depression (e.g. Omg you guys, I'm so depressed. They don't have my size and these shoes are so cute!). And those constant references to depression that were, though I didn't know it at the time, really not accurate at all warped my sense of what depression is. It never occurred to me that I might have diagnosable, clinical depression until into adulthood after my son was born and it had gotten significantly worse and I watched a documentary about depression. A man in the film described how he felt and it was a revelation for me. And that's when I sought help.
That's the primary reason I have a problem with those no-harm-meant jokes ... over time they create barriers to understanding, diagnosis, treatment, and support.
Plus, yeah it's hurtful sometimes too. But even in that context I don't think it's so much that any of us need a thicker skin. Like you said, most people don't find it funny to make light of cancer. I'm guessing if they did, though, there would be plenty of hurt feelings. And I don't think most people would respond to hurt feelings due to making light of a brain tumor with, "Geez, can't you take a joke?"