I want to be nonchalantly amused by the phrase “it’s just semantics.” I think I’d look cool and impervious instead of what I actually feel – infuriated. Semantics is, by definition, the study of meaning. How anyone can expect to communicate effectively without considering linguistic meaning is utterly beyond me. Meaning matters. And because I have Dissociative Identity Disorder, both the meaning and usage of crazy matter to me.
Inaccuracy Bugs Me
I’ve been reflecting on the guests posts from last week: Words Don’t Hurt People, People Hurt People by Natasha Tracy, and Ableist Word Profile: Crazy by RMJ. One thing that struck me when reading RMJ’s post was that, like the mythology that surrounds Dissociative Identity Disorder has roots in the truth, most of those negative connotations of the word “crazy” spring from reality, however distant. In light of that, I understand why Natasha Tracy and others choose to embrace the word. Why not call a duck a duck? The problem as I see it is that while most of us reserve the word “duck” exclusively for referencing actual ducks, we don’t use “crazy” in the same way. And it doesn’t matter whether it’s used in positive or negative ways. If, from this day forward, we all used that word only to mean (1) stunningly awesome, or (2) mentally ill, it would still irk me. Because if your boyfriend is crazy hot, DID isn’t crazy. And if DID is crazy, your boyfriend isn’t crazy hot.
Similarly, people chronically equate schizophrenia with Dissociative Identity Disorder. I hate that. Not because I think schizophrenia is somehow worse than DID, or a wretched disease that sullies my name by association. It’s just that I don’t, as it happens, have schizophrenia. DID isn’t schizophrenia any more than a screaming deal on notebook computers is crazy.
Or Is It Something Else That Bugs Me?
For several years after diagnosis I couldn’t stand most conversations about Dissociative Identity Disorder. I experienced uncomfortable, visceral reactions to words like alter, multiple, and switching. Fast forward to today, when my Facebook status read:
new job + moving to a new place + DID = the perfect storm. if it weren’t for social media my friends would think i’ve been kidnapped.
It wasn’t long ago that I, thoroughly mortified, would have deleted my Facebook account altogether if a member of my system mentioned DID there. These days, I’m completely “out” about Dissociative Identity Disorder. But popular understanding of DID hasn’t changed drastically. For the most part, the most widespread ideas about it are still woefully inaccurate. And yet I don’t have a problem openly labeling myself as someone with DID. What gives?
Maybe there’s some truth to that oft-dispensed mom wisdom: it doesn’t matter what other people think of you; it’s what you think of yourself that’s important. It’s always sounded hackneyed and overly simplistic to me. Still, I can’t help but notice that the misconceptions about DID don’t get under my skin as much since I came to terms with my diagnosis.
Maybe one day the same thing will happen with “crazy.”
For me, living with a woman who had DID and NOT knowing that she had it, was crazy. But once I knew she had it, she finally made sense.
I’m glad you are comfortable with it. My wife still isn’t. I wish she would be because I think she’d find a lot more support for her than she realizes.
Sam
Hi Sam,
For me, living with a woman who had DID and NOT knowing that she had it, was crazy.
I can definitely understand that. I think my partner would say that, for her, even with knowing about my diagnosis, it’s still crazy. I should ask her what she’d say to Don’t Call Me Sybil readers actually. That would be interesting, I think, to publish a partner’s perspective. There aren’t a whole lot of you brave souls out there sharing what it’s like to live with someone with Dissociative Identity Disorder.
I wish for your wife’s sake that she could feel safe being more open about it too. And I’m guessing you’re right about her finding more support than she realizes. I am totally out about DID now – as in, I treat it the same way I do about other things I’m public about. I don’t hide the fact that I have a son, or a woman partner, or that I’m 36. And I don’t hide DID either. Because writing about DID is a large chunk of my job, it would be more difficult for me to hide it than if I was, say, an accountant or something else totally unrelated to DID. So I understand that my situation is different. Still, I do hope one day more people will feel safer with disclosing their diagnosis to trusted people in their lives. It’s surprising how supportive people have been. And it’s a lot less lonely.
Thanks for reading and taking the time to comment, Sam.
For me personally, its easier to be considered crazy that being out as you-know-what. I have had some really bad experiences with my others talking to psychologists, so its just easier to..if not lie, reroute the truth. I omit a lot of my internal life. Its not what I would choose, I had some really good therapy with the person who diagnosed me, and I would be doing better if that was the case now. I posted earlier that I was definately crazy. It might be the word doesnt bother me because I know who and what I am.
NancyE
Hey Nancy,
It might be the word doesnt bother me because I know who and what I am.
That makes sense to me. I think that’s part of why I’m ok with being public about Dissociative Identity Disorder. But part of that is also because I’ve been fortunate enough not to have a lot of disturbing consequences of disclosure. I’ve had people react negatively a time or two. But that’s not the same as repercussions that impact my life in ways that are disruptive and beyond my control. I wish that no one with DID would ever have to suffer because others found out about it.
it is interesting, the other day my therapist and i were talking about using the word “illness” to in reference to DID and other mental….well, illnesses, for lack of a better term.
he and i agree that DID is not an illness. well, he agrees a little more than i do…ok, i agree in a logic based sense but in a “living life as a multiple” sense, i waver. not because i still think of it as “crazy” but because…well, it kind of sucks. no offense meant but trying to honor/communicate/love/get along with/mediate/share a body with 8 other people is HARD WORK. there are actually 13 of us altogether but only 9 of us have names/identifiers.
i am totally “out” about being a multiple too, mostly because i think i don’t know how to be “in” about anything anymore…and the insiders won’t let me anyway, they are all about being known right now, because the more people that know, the harder it would be for me to go back to ignoring them…i see their logic….
now, where was i going with this again? geez….um….i like your blog!
oh right. because DID is an adaptive process that actually makes sense, i can’t really see it as an illness…but other things i can…like my depression is a malfunctioning of my brain…where we couldn’t decide was PTSD because while it does cause changes to the brain, it is ALSO somewhat an adaptive, learned, process….
thoughts?
i should say that we couldn’t AGREE about ptsd
I don’t really like “illness” either. How I view my wife and the girls is really more of a person with a broken spirit. I think that’s why I can pour massive amounts of love, safety and a sense of belonging (in my family) into the insiders and that is every bit as or more healing, in a complementary way, as the therapy they are receiving. But I’m more of a pragmatist than a theorist on this issue right now. All I care about at this moment is what is the most helpful in the healing process.
Sam
Hi Maggie,
Thanks for your comment.
Because DID develops in childhood as a way to cope with intolerable situations/experiences, it is without a doubt adaptive functioning … at that time. In adulthood, however, DID is maladaptive. That’s why it’s a disorder, as opposed to, say, a lifestyle. While there are certainly upsides to having DID as an adult, overall it’s not exactly a good thing. If it were, those of with it wouldn’t have the struggles with it that we do. And while I understand your therapist’s perspective – I saw a trauma specialist once who refused to even call it a disorder as she felt it didn’t honor the adaptive nature of DID – I respectfully disagree with him and, in fact, think the insistence by outsiders that Dissociative Identity Disorder is not a mental illness is just as invalidating as the insistence that we’re a bunch of hopeless, hapless nutbars. Like you said, ” … it kind of sucks.” A refusal to acknowledge the maladaptive nature of DID in adulthood isn’t helpful, I don’t think. It minimizes the very real pain DID often causes. Furthermore, we cannot have it both ways: if it’s a diagnosable disorder, it’s a diagnosable disorder; if it’s adaptive functioning, it’s adaptive functioning and we can all hang up our coats and quit going to therapy.
Having said all of that I will also say that I understand that for a lot of people “mental illness” is demeaning. And I further understand that because Dissociative Identity Disorder is adaptive in childhood, it feels a bit like a slap in the face to call it an illness simply because you’ve aged.
i totally get what you are saying and it makes sense to me. i think my therapist really wants to get across to me that it doesn’t make me “crazy” or defective in some way…trying not to pathologize it. since i have been some form of therapy/treatment for nearly 15 years i have each facet of my behavior attributed to various and sundry diagnoses…the most damaging of which i think was borderline personality disorder, which really i can identify with except i was always told i was easier to get along with than most other ppl diagnosed bpd…i say it was damaging because just about all of the literature out there for a very long time about bpd said that folks with it are basically evil, crazy, killer types…and there is something about “personality disorder” that is so personally damning…like there isn’t a disorder, i WAS the disorder…DID, on the other hand, doesn’t feel so marginalizing….weird, huh?
I don’t think it’s weird, no. It sort of makes sense, actually. Dissociative Identity Disorder is a trauma born disorder. It is the result of things outside of our control. Whereas we generally think of personality disorders as existing on their own, and not the effect of some external cause. There is something rather painful about that. The implication is that one is mentally ill just because that’s just who they are. I’m not convinced that’s necessarily the case with personality disorders and if word on the street is any indication, neither are a lot of mental health professionals. Perhaps the DSM-V will help clarify that when it comes out in 2012.
Anyway, yes, I can see how Borderline Personality Disorder might feel blaming and judgmental whereas Dissociative Identity Disorder might not.
is it me or does the reply button go away after a certain number of comments in a thread?
Wow, you’re right. That’s really … strange.
i thought so too