I feel really inspired by your comments on my last post, but I want to go back for a minute and say more about why I hesitate to continue writing about Dissociative Identity Disorder.
I’m a fan of this blog on health and nutrition that is just phenomenal. Really, really great.* Browsing the blog’s Facebook page yesterday, I came across a link to this article, along with the following introduction:
Mental health issues are ABSOLUTELY metabolic. Sleep is one of the most important keys for metabolic balance. Good sleep can regulate everything from your sex hormones to your appetite and energy levels. Now research is linking poor sleep to schizophrenia.
What We Say Impacts Others
At first, I was super irritated. But the more I thought about it the more I realized that it’s not that she’s wrong. In fact, I’m not convinced she is. It’s more that you can’t toss slivers of information on complex, emotive, and life-altering conditions out into the ether in such a casual, breezy way without a healthy respect for how seriously people may take you. Well, you can. But it seems … I don’t know, irresponsible? I’m not sure. It just doesn’t sit well with me. All I could think about was that someone with schizophrenia might get completely wrapped up in her statements, throw away their meds, and spiral out of control before they ever achieve that all-important metabolic balance.
What I Say about Dissociative Identity Disorder May Impact People Living with It
I remember what it was like to feel so confused and desperate for answers that other people’s thoughts on Dissociative Identity Disorder had the power to completely uproot whatever tentative grounding I may have had at any given time. I was a half-drowned person, getting caught in undertow after undertow. It was a dangerous time in my life.
Frankly, I worry about being someone’s undertow.
How Do I Blog Responsibly about Dissociative Identity Disorder?
Still, one of the biggest problems I have with psychiatry’s attitude around Dissociative Identity Disorder, is that it’s infantilizing. And I’m not really interested in participating in what I see as a stupendously arrogant assumption: you’re too fragile to handle what I have to say about DID.
It’s not like I’ve towed the traditional, ‘DID is multiple personalities and it’s caused by severe child abuse’ line or anything. So I don’t know exactly why I’m concerned about it now. My policy has always been that I’m responsible for my words, not how they are received. And I stand by that. I guess it’s just that, as my understanding of Dissociative Identity Disorder evolves, I find myself re-evaluating what “I’m responsible for my words” means.
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*I feel like a heel for introducing you to Elizabeth Walling for the first time in a way that may end up putting some of you off. Because her blog is, in my opinion, an absolute must-read for anyone struggling with the short and long-term effects of trauma. For example, check out her tips on lowering cortisol (popularly known as “the stress hormone” and possibly the #1 reason so many people with chronic trauma backgrounds struggle with their weight).
You make a lot of sense.
This is from the guy “they” got to. I can understand each and valid reason that you have given above for the hesitation you feel about influencing others ideas about DID. I don’t see that you are really doing that, and yes I have a biased opinon, but I have and do read and reread your posts and have actually done some of it in the 48 hours, based on your post yesterday, and not once in any of those posts did you ever say this is exactly what you need to do about DID or that this is the gospel on this subject, am I being a little vague well yes because not once did you put it to your readers that what you were saying would be anything like what they were feeling, do you not remember this, what you have done for a very long time is give information as you see it based on you and you alone and your struggles and have given stories about you and information that you may or may not have found helpful. And as I read the comments of these posts they were all positive about what you have shared, some disagreed with you and some didnt believe you but that is to be found on any subject that anyone writes about, here I go being long winded and shit, and it maybe that I am the only one who is against you stopping posting but I want you to know that your posts were about you and the information you thought was helpful to you and not that you were preaching to the masses, I said that twice didnt I. Fuck it.
No one can tell you whether to stop writing or not, it is up to you, I for one will miss the opportunity to read what you have to say. That is all I can say to you, if you stop writing I will miss your posts and I do have your email address so dont think I wont email you questions every once in a while.
With much fondness and no little regret,
Dan Kline
Dan, thank you.
When I started writing at Dissociative Living I looked around at other mental health consumer bloggers to get an idea of how others were doing it. Most of those blogs were very arrogant in that they presumed to know what’s best for others. They really put me off as someone with a mental illness and I knew I didn’t want to write in a way that puts me off when others do it. So I made a conscientious decision to write about myself. I strongly believed that my experiences were the norm for people with DID but I also knew that assuming that would be not only arrogant and hypocritical, but alienating to readers. And I didn’t want to alienate readers. After all, my motivation in writing about DID was and still is to provide an alternative resource of information for those people who are unsatisfied with the resources most readily available. In other words, I wanted to write the articles I would have wanted to read when I was first diagnosed and trying desperately to make sense of my diagnosis. And I definitely wouldn’t have wanted to read some jackass proclaiming that they knew my struggles better than I did and that they knew what I should think and do. (I already had a therapist.) So I worked hard at writing from that perspective you describe:
… what you have done for a very long time is give information as you see it based on you and you alone and your struggles and have given stories about you and information that you may or may not have found helpful.
I’ve been wondering how I can continue to write about DID honestly, but while maintaining a healthy respect for the potential impact my words may have on others. And you’ve reminded me that my original approach – stay self-focused, don’t tell people what they should think or feel or believe but tell them what you think or feel or believe and trust that the people it resonates for will find their way to it – is the right one for me.
I believe you have solved my conundrum, Dan. Thank you.
I am so glad to have helped in some way, I believe in what you are doing and as I have found out so do many others. Special is as special does. Sorry if I am not making sense or if my typing is more fucked than normal but they have me on a low dose of Serequil (spelled right or wrong, dont care) and I am not liking the way it is making me feel right now, little out of it, and the only reason i started taking it was because of my anger issues right now, oh so fucking angry, and i have no reason as to why, but i am and have been angry for over a week, lashing out, hurting others feelings you should read what i put the lady at the SSA through, but i wont say i am sorry for that she deserved it http://whattodoaboutme.wordpress.com/2012/06/19/my-time-spent-in-the-suck-zone-called-ssa/ well i will leave you to it and well hell i dont know,
Much respect and devotion,
Dan Kline
Seroquel is highly sedating. If you’re feeling loopy, out-of-it, or like your thoughts are sliding all over the place, that’s not surprising. Here’s a link to a series Natasha Tracy (bipolar researcher and blogger) wrote on Seroquel. You may find some of it helpful.
As for the anger … it’s possible the Seroquel is making it worse. A number of people (including myself) have experienced something called Seroquel Anger – extreme, even uncontrollable hostility and aggression while on this drug. Google “seroquel side effects anger” to find out more.
thanks i will check it out right now, i think, maybe, aw what the hell, i will
Holly,
It was my therapist who first directed me to your blog on Healthy Place. Another client sent her something you had written & she thought it would be helpful to me…it was & I started reading more. It was a big relief to finally a group of people who could relate to what I was experiencing. I didn’t feel like I fit all the weird stuff I had read about DID, so finding real people going through the same thing was huge for me.
I understand your concern about someone who is hurting misunderstanding your words, but I want you to know that the opposite happened with me. It has helped me forward in a positive way.
Lenore
It is warming to see how much you think of others.
But, here’s my take on blogging. Say what you want – and what you want to be heard. You can’t control how other people react to your writing.
-Nel
Once I had the official stamp of DID on my forehead, I worried about my “role as a blogger” but then I realised that the blog always has, and always will be just part of our story, albeit a part we choose to share. I blog for myselves, not for anyone else. If the blog informs/educates/whatever as well then obviously that’s good but it’s not my aim.
You are absolutely right that you are responsible for your words, not how they are received. Your blog- your rules.
Keep blogging.
If you want to obvs.
Xxx
Holly, I have a couple of questions that come to mind when I read this and the last post.
First, how is the example that you cited of “slivers of information on complex, emotive, and life-altering conditions out into the ether” substantially different from your recent two posts?
Second, are you now saying that all the “this is how it works” articles you yourself have written on this and the other (DL) blog that appeared to be based on your own experiences are now all not valid? Because almost all that you said in words and in video was in large agreement with what most of what the subset of the DID community that many respect says.
You, and others, have long talked about not being critical and staking a middle ground. But now, unless I’m reading it wrong, it appears you are in some other very different place.
Paul
First, how is the example that you cited of “slivers of information on complex, emotive, and life-altering conditions out into the ether” substantially different from your recent two posts?
If by “recent two” you mean only the last one (Your Therapist Doesn’t Know What Dissociative Identity Disorder Is) it’s not different at all. Which is THE WHOLE POINT, Paul. Seriously, did you actually read it?
Second, are you now saying that all the “this is how it works” articles you yourself have written on this and the other (DL) blog that appeared to be based on your own experiences are now all not valid?
Yes, Paul. Saying, essentially, “I don’t know how to continue writing about DID honestly and responsibly” is exactly the same thing as saying, “Everything I’ve ever written about DID before is totally invalid.” Again, did you actually read it?
You, and others, have long talked about not being critical and staking a middle ground.
Erm, no. I haven’t. At all. Ever. In fact, I have to wonder if you’re confusing me with another blogger. I have never advocated against criticism. I have, in fact, repeatedly urged more critical thinking, not less. I have never been a ‘let’s all get along’ blogger. I advocate for respect, and maybe to you that means ‘staking a middle ground’ and ‘not being critical.’ But it doesn’t to me. And it never has.
As for being in “some other very different place” … well, that’s a dramatic exaggeration but yeah, kind of. People evolve.
I have nothing against disagreement and debate, Paul. But I’m getting tired of responding to criticisms of things I haven’t actually said. Read the posts. Don’t just skim them with the single-minded goal of finding something, anything to call me out on. I assure you, there’s plenty to disagree with me about; you don’t have to pretend I said or meant something I obviously didn’t in order to challenge my work.
Holly, First, I mistyped. I meant to say “You have long talked about BEING critical YET staking a middle ground.” I was only saying that you have been open to seeing that there have long been “two sides” and those who arm themselves on the left and those on the right. But that the reality is neither of those two (i.e., it’s not an either-or).
Holly, what am I supposed to read that I haven’t read carefully enough? In the June 18 post you didn’t back up anything you said, so you are surprised that someone would have questions given how long you have written about this subject? I’m not criticizing you or attacking you. I’m only asking you some questions that immediately came to me when I read your posts.
To add something constructive, I think the “therapists and doctors” you refer to on June 18 are a subset of the whole. I don’t see a therapist or a doctor who pushes any definition or framework on me at all that’s in any way as you describe. I am sure some do. How many? I have no idea. Good therapists and doctors do not impose any framework on anyone and know to diagnose the minimum disorder (or none at all) that gives a context for their experience and allows one to heal. Most everyone agrees that a diagnosis that is “wrong” can push a patient in a certain direction. All I am saying is that I don’t think it’s as black and white as you say it is.
But even with a DID diagnosis, one should not be pushed into a healing or a psychological framework that is one-size-fits-all. There are all types of therapists and treatments, and each person’s experience is their own unique experience. For 20 years I have healed pretty much without using the standard framework. There are elements of it that fit me, but many that don’t. The framework is just a reference.
Of course I would agree with you that it’s tricky if a patient ends up trying to fit that framework that does not fit, but more often than not, patients don’t want to fit the framework. Frameworks exist elsewhere too, and can trap patients. But it’s not the framework that traps them. It’s them. I met someone just recently who told me they are finally relieved that they know what they have: borderline personality disorder. As if it’s diagnosable like diabetes is, which it isn’t. Just as DID isn’t. I’ve met someone else recently who wanted to have the DID label, and did not come close to fitting it, yet they still persisted.
Sadly, I don’t think psychological conditions will ever be cut and dry like a blood test is for a many medical conditions.
For some patients, having the label is probably not a good thing. For others, it provides context with which to heal. But to say universally that the label makes everyone “worse” I think is way too far a stretch.
Thanks for listening.
Paul
Alright. One more time.
I was only saying that you have been open to seeing that there have long been “two sides” and those who arm themselves on the left and those on the right. But that the reality is neither of those two (i.e., it’s not an either-or).
I don’t believe there are two sides. I don’t care about “sides” … that’s you, not me. When I find something I think is helpful and meaningful, I share it. When I find something I think is pretty unhelpful, I share it and why I think it’s unhelpful. What sides these things come from, if any, is totally and completely meaningless to me. I don’t know how to be clearer. It doesn’t matter to me if it’s something the ISSTD said, or it’s something the False Memory Foundation said, or if it’s something some other blogger said, or whatever … I don’t care where it comes from and I don’t care if you or anyone else perceives “sides.”
Holly, what am I supposed to read that I haven’t read carefully enough?
I never said you haven’t read carefully enough. I said you missed the entire point. Which you did. And I don’t believe that has anything to do with whether or not you “read carefully” (I would never advise anyone to read my work “carefully,” that sounds hideously boring). I believe it has to do with the fact that you read for the sole purpose of finding something to criticize. Like I said, knock yourself out. But until you criticize something I’ve ACTUALLY SAID, I’m pretty sick of rehashing it with you.
In the June 18 post you didn’t back up anything you said, so you are surprised that someone would have questions given how long you have written about this subject?
No, I’m not surprised. And I’m not even surprised now that you’re saying I was surprised even though at no time did I ever say anything that sounded even remotely like, ‘I am surprised that someone would have questions.’ I’m particularly not surprised that YOU have questions, Paul. And of course I didn’t “back up anything I said” … like I’ve reminded you before, this is a blog, not a scholarly journal. Which means what I say are my thoughts, my opinions, my beliefs, my experiences … I am the only source I need to cite.
All I am saying is that I don’t think it’s as black and white as you say it is.
See? Stating your reactions to a post in a constructive, meaningful way isn’t actually that difficult, Paul.
But to say universally that the label makes everyone “worse” I think is way too far a stretch.
Aaaaaaaannnnd I didn’t say that either.
Look, I have nothing against questioning, criticizing, and arguing. In fact, I firmly believe a healthy debate can be highly productive. But I’m pretty sure productivity isn’t what you’re after. You introduced yourself to me by sending me an unsolicited email to let me know that another DID blogger I followed on Twitter was a dangerous, awful human being and I should stay away from her. Since that strange introduction, you’ve done the same thing about another blogger whom you also deemed dangerous. In both cases, your stated desire was that those two bloggers be blacklisted and shut down completely. And in both cases, the bloggers in question were writing things about DID that you didn’t like. And, over time, your comments on my own blogs have drifted from real conversation to transparent attempts to challenge me … which would be fine if you were challenging things I’ve actually said. I don’t know if you’re being deliberately obtuse just so you can have something to argue about, or if you are genuinely unable to comprehend what I write. But what I do know is that lately, every single time you comment – EVERY SINGLE TIME – you are criticizing things I don’t actually believe and haven’t actually said. And I’ve spent a lot of hours, cumulatively, re-explaining things to you that other readers understood the first time. And now, after all of this time, and upon reflection of the things you’ve said about other bloggers, I no longer believe it’s just that you’re misunderstanding me.
I’m sorry that you don’t like what I have to say. But I’m not going to play Kathy Broady or Jeanette Bartha for you. If you want to share your feedback on things I’ve actually and for real said, go ahead. And by all means, be as critical as you want. But I’m not going to waste any more of my time or energy arguing with you about things I haven’t said and don’t even think. It’s absurd. And exhausting.
Holly. Just a couple of strictly rhetorical questions. Why would you put out personal history that is private plus it’s not even factually accurate? If you are saying that I am starting trouble, then why is my language and tone so vastly different from yours which is directly attacking? And finally, which of the two of us is really the one uncomfortable with statements and beliefs we don’t agree with? You, and anyone else, can believe anything you want, anything. It doesn’t matter to me. But when people have comments on blogs blog open and talk about something that piques my interest, I sometimes comment, and sometimes point out a different take.
Let me know when you do. Point out a different take, that is. I’d sure be interested in reading it. I’m not interested in reading any more of your diatribes about things I’ve never actually said. But, by all means, keep posting that stuff too if it floats your boat. Just don’t expect me to respond to it.
I am a frequent reader but have never posted in reply, until now. It is my personal opinion, as I have cautiously perused various web offerings on the subject of DID, that your blogging is the “gold standard” in the field of thoughtful expression on such a ‘messy’ topic.
This is not, however, because of ‘what’ you write but rather ‘how’ you write: you are an impeccable communicator.
I can appreciate your concern regarding the responsibility you assume when discussing such an ‘inflammatory’ topic (is it not exceedingly so when even those diagnosed similarly find themselves arguing disparate positions on therapy, diagnosis, pathology, etiology?) among an ever-increasing readership of people harboring highly-charged opinions stemming from deeply personal experiences and thoughts on the matter. This is not the typical blog on growing the perfect tomato.
It has been my own opinion, such as it is, that you have distinguished yourself as being quite responsible in all your discourses, clarifying your opinions as such, and framing careful rebuttals when corrections of misunderstandings have been required. Do readers not follow because they are interested in just that: YOUR OWN VIEW on living with DID?
That you are aware of the impact your words might have is what makes you responsible. That you are frustrated to the point of discouragement shows that you have incredibly high standards. I hope you continue — or discontinue — blogging for your own reasons. But I hope you find some satisfying labor to share your mind with those who hold it in such high regard.
-Akkid