Should I tell my spouse I have DID?

No. <Well, he has to know something is wrong.>

This is too screwed up a diagnosis for even us to believe sometimes, how the hell to you expect HIM to believe it? Some thoughts on disclosure.

What just happened

Based on what has happened so far, I wish I’d never told him. He’s at a bar right now trying to “deal in his way with how stressed his head is with your stuff.”

<True. It hurts tremendously to cope with this DX, then also feel like you must manage your spouse’s coping (or lack thereof) as well.>

Although this post began (and continued) stormily, it has been edited in a more common voice. But I will digress again with my own experiences with injected dark humor and nuggets of somewhat hopefully useful stuff.

Basis for my perspective

In this interests of disclosure, I have been diagnosed for about 11 months. PTSD first, then DID. My husband has known for years I have some very different “personalities,” and occasionally I behave completely out of character.

I have leaked little bits of the DID diagnosis to him over the last many months. Often when we have a few drinks and I can get up the nerve to talk. He usually is supportive but rarely asks questions – “I don’t know what to ask” – he just wants me to “get better.”

At this early stage in my recovery, I wish I’d kept my revelations to DID to myself. Just focus on PTSD. And I would seriously advise you to consider doing so as well for some period of time, depending on myriad factors.

You both have enough to deal with simply with the PTSD crap, and that can be enough itself to put a marriage on the rocks. Use it as your “test case” to gauge your spouse’s own coping mechanisms, and identify changes your marriage may need before progressing to the “big DID” admission.

Why not go for the whole shebang right away?

Several factors are at play. On one hand, my therapist argues that my husband has already “seen and dealt” with the different parts of me. Well, true in some cases – he has seen some rage and unreasonable behaviors both good and bad. But a lot I have been able to hide. I know when I switch to a protector; I know when I switch to a nurturer.

These more subtle changes that can more easily be “hidden” as different “moods.” For the time being, let them be. There is no need in the early stages to sit your spouse down and work through the laundry list of alters, names, jobs, etc. You want to throw a loved-one into a loop, start “correcting” him when he calls you the “wrong” name. Heh heh.

A short term alternative

“Then what the hell am I supposed to tell him?” I hear you cry.

Well, here is why this is a blog and not a peer-reviewed journal… because here’s my official answer: “beats the shit out of me.” But walk with me a bit and you may find something to guide your way a little.

Here’s my best thought right now – you probably have PTSD too (“DID patients almost universally suffer from co-morbid PTSD”), which I think is a hell of a lot easier for someone else to digest (in my opinion) than PTSD and DID (or PTSD/DDNOS) at the same time. [ISSTD]

PTSD is often thought of as part of the dissociation continuum, so focusing first on PTSD is not inappropriate. [Cohen] [Mind]

And here is the diagnostic criteria: DSM-IV-TR criteria for PTSD. I am not going to review the criteria – they are all over the internet. But recognize that, as a part of the spectrum, PTSD is a lot to work with initially without broaching the addition of DID-ness right away. [APA]

For example, just understanding triggers is important. Your spouse may not need to know that you have switched to a particularly vicious protector alter as a result as a result of some trigger. He just needs to learn (with you) that something is very wrong, what caused it, and how to deal with it.

Why would I suggest you “lie”?

Let’s look at some bonafide research. Benjamin [1994] provides some thoughts of several researchers/clinicians in the area of marital work with an individual with DID (bolding is my own):

Without exception, every author agrees that the diagnosis of a dissociative disorder disrupts the marital homeostasis. Some authors view marital work as strictly supportive to the individual therapy of the dissociative client, but others see it as a more integral part of the overall treatment plan.

The article presents conflicting beliefs – some doctors believe the spouse should be included and educated in all phases; others only recommend inclusion in the post-integrative phase. Spouses should be provided educational information, should be encouraged to “share thoughts and feelings,” provide safety for the MPD client and avoid sabotaging the individual’s treatment. Spouses are encouraged by some to seek individual treatment before couples treatment ensues at the integration phase.

This whole “disruption of marital homeostasis” is what I am experiencing right now, and is the reason for this post.

Homeostasis: The tendency of the body (and the mind) to naturally gravitate toward a state of equilibrium or balance. [AllPsych]

So I suggest, lie? Or perhaps just the sin of omission.

You may not need to if you have a very understanding spouse who also has a support network to draw upon. And who can recognize that your “crazy” moods are not directed at him. And who will not attack you for “not getting over it since it happened so long ago.”

You must recognize that many spouses will say they will support you, because they love you. And they may tell you (and believe themselves) that they have no intention of leaving you.

But despite their best intentions, they just may not be able to handle your diagnosis. And you need to consider this.

Support for the individual with DID

It appears that this is essential. And for me, the introspective, fact-finding, quiet, few-close-friends type of woman, this is a huge deal for me to admit.

So I shall repeat for those of you skeptics with DID, and yes, I mean you. Because I am one of you.

You need friends and/or family to get you through this.

Dissociation and all these wonderful coping mechanisms, all these selves…when you start realizing the magnitude of the circus inside you, it can be incredibly overwhelming. It threw me over the edge with anxiety and despair, and into the realm of necessary medication. But that’s another story.

The point is, it is literally too much for one person (or even all of you in there) to handle. Especially the “presenting personality” … the one usually running the show at the time you seek treatment…the one usually unaware of “all those really interesting different parts of you that the rest of the world may have been exposed to without your knowledge.” heh heh.

First and foremost, you need a good therapist. Doesn’t need to be a $350/hour psychiatrist. Check other options – my primary therapist is a licensed clinical social worker…she’s dealt with many women and children in trauma situations…less research/clinical and more real world.

Second, you need a couple people you can talk to. I have a few, and none of them knows it all. And there is some shit none of them knows. Or may ever know. I have a very hard time connecting and truly believing that someone will be there for me. This is apparently typical of DID and PTSD. But again, another story.

You get your support network and use it. As best as you can. Your ability to do this consistently will be challenged daily.

But if you are going to tell your spouse about this, he has to have his own support network. Because he’s gonna need it if you want your marriage to survive. Because this shit seems right along the edge of the “for better or for worse” thingie you tossed out there in the rosy glow of white dresses and wildflower bouquets.

Support for the spouse of the individual with DID

People are different. Some are information gatherers (yours truly) who prowl the internet and bookstores for information – learning, absorbing, trying/failing/learning again.

Others are deniers. I don’t mean that in a bad way, but some people do not want to know. Head in the sand. Who see and hear only what you do/say. And who base their opinions on your behavior in the throes of a switch or a flashback or a nightmare or even just after a string of long days of despair.

I have found very little on the internet about support for the spouse. Well, many are fee-based research journals, and others are nothing more than recommendations that family members receive “educational material and supporting services.” Grr.

1) Here is a very informative “Manual” from a guy named Jeff Vineburg whose wife has DID. It is called The Significant Other’s Guide to Dissociative Identity Disorder. Be aware that much of the material is dated (mid-late 1990’s) but it does show how one very special man helped his wife and his marriage with his concern, insight, and support. There is good stuff here.

Despite its age, Vineburg includes a very important section that all spouses should read and take to heart…it is half way down the page and is called “THIS ISN’T ABOUT ME – **********the most important lesson of all**********

Guess what… it *is*.

A common reaction of most partners is that all of the problems in the relationship stem from their SO’s disorder. They don’t.

The problem isn’t about what SHE does – it’s about your REACTION to what she does. It’s really that simple.

This is the most important thing that you have to take with you, even if you get nothing else from this.

You are responsible for only YOU. You have to make sure to take care of YOU.

This is the only place on the internet where I have seen a man advising, pleading with other men to reach out to someone. As a woman with DID, I agree with him and dearly wish my husband would.

So what do you do? Well, support her to the best of your abilities. But do something for you too….Whatever your hobbies are – indulge yourself.

You’re going to need some support from someone – friends, family, email buddies, a support group. People you can go to for help, people you can bitch to, people who are also interested in you.

Detach a bit. Let your SO heal. You’re not going to speed anything up, so sit back and do what you can … you have to sit back and let her drive, even if it means she’s sleeping in the back seat.

My husband has agreed to see a doctor (our GP, my therapist, my meds doc – pick any one of these or any other I tell him) for recommendations. Follow-through is a huge issue with this man who I know loves me. But who is unable to reach out and talk to anyone about anything serious.

If your spouse cannot or will not develop his own support network, I would seriously consider not telling him you have DID.

2) Yahoo Support Group I can’t endorse this one way or the other, but it is out there – a support group for spouses –

This “So List” or Significant Other list is maintained as a resource for the support of those persons who are in an interpersonal relationship with someone who has been diagnosed as DID Dissociative Identity Disorder…

The purpose of the list is to provide a forum … to ask questions, voice concerns, and to offer encouragement and share experiences with others in response to their “posting” to the group while traveling this precarious journey toward healing for the abuse survivor.

This is a group for the support of the supporter.

Guidelines for Disclosure

For some completeness, here are some sites that talk about disclosure in general, rather than specifically to a spouse. But the information can be helpful.

My Guidelines for Disclosure – Should I tell people I have multiple personalities? by another woman with DID named Emily.

References

American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders DSM-IV-TR ( Fourth ed.). Washington D.C.: American Psychiatric Association, accessed from http://www.ncptsd.va.gov/ncmain/ncdocs/fact_shts/fs_dsm_iv_tr.html

Benjamin LR and Benjamin R (1994). Issues in the treatment of dissociative couples. DISSOCIATION. Vol. VII, No.1. accessed from https://scholarsbank.uoregon.edu/dspace/bitstream/1794/1569/1/Diss_7_4_5_OCR.pdf

Cohen NM (1992). Dissociative Spectrum. The Treehouse, http://www.survivors-treehouse.net/Dissociative%20Spectrum.html

Emily (2006). My Guidelines for Disclosure – Should I tell people I have multiple personalities?, Dissociative Identity Disorder – Help Me Help Others, accessed from http://home.comcast.net/~riversrages/disclosure.htm

International Society for the Study of Dissociation. (2005). [Chu, J.A., et al.]. Guidelines for treating Dissociative Identity Disorder in adults. Journal of Trauma & Dissociation, 6(4) pp. 69-149. Journal of Trauma & Dissociation, Vol. 6(4) 2005 Available online at /www.haworthpress.com/web/JTD doi:10.1300/J229v06n04_05) or http://www.isst-d.org/education/treatmentguidelines-index.htm#adults

Mind for Better Mental Health (2008). Understanding Dissociative Disorders, Mind (National Association for Mental Health, England) http://www.mind.org.uk/information/booklets/understanding/understanding+dissociative+disorders.htm#What_are_the_dissociative_disorders

Vineburg J (1992) The Significant Other’s Guide to Dissociative Identity Disorder. accessed from http://www.op.net/%7Ejeffv/so1.htm

Homeostasis. AllPsych Online, accessed from http://allpsych.com/dictionary/h.html.

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10 Comments»

  Tigerweave wrote @

Meh…. in an odd sort of way DID itself is lying by omission – omitting to allow parts of yourself to access certain knowledge and experience about yourself.

Being tough kinda survivalist person which invented [1] the skill of DID to survive, I don’t see it as a sin to omit to tell someone, however close, that you are operating in this way internally, until it is safe to do so.

[1] Well I didn’t know it was a “disorder”, I was just inventing coping tactics on the run!

BTW, Although I had the DX and Eddy knew all about it, it was about 4 yrs before I understood the way the DID was working for it to really become an issue. Before that it really *was* simply down to Eddy (and I) understanding that “this” triggered “that” reaction – if we were lucky it was that clear-cut.

(I know you have disclosed, just adding my experience and opinion in 🙂

  emilylonelygirl wrote @

Tigerweave,

Yeah, I didn’t know it was a disorder either. I just thought I was crazy! 🙂

Understanding triggers are a big thing in a relationship. And one of the reasons I suggested just disclosing the PTSD first. But everyone is different, so better advise I should probably gives is to talk to a therapist first.

  Riche wrote @

I tried to keep my mpd from my spouse until during and episode an alter told her she doesn’t even know who she was talking to. 10 min later we were on the way to my therapist. My love road this messy roller coaster for almost 10 years and now she has left, says she just can’t take living with all the personalities and all the confusion…..now i have absolutely no one to talk to and feel very alone for the first time in my life..besides my shrink i want somebody to talk 2 that understands

  emilylonelygirl wrote @

Hi Riche

Wow – that is a hard time. And 10 years is a hard time for both of you to deal with this. Confusion is true and hard and scary. It certainly cannot be anyone’s fault that this has happened – but I hope that you can find many of the good websites and forums out there to realize that there are many people like you. As your therapist if forums are a good idea, or if talking to other people would be good for you.

And even if you feel like there is no one out there, there really are. I don’t run a forum here because there are many good ones out there. Check around and lurk for a while to see what people say – to see if maybe you can feel comfortable talking to the people in that forum. After you have “hung out there” for a while and you feel comfortable, then introduce yourself. I hope you find a place where you feel comfortable.

My best
Emily

  David wrote @

As someone who is not in a relationship, I have to say that I consider the DID diagnosis to be the nail in the coffin. I don’t know how I would ever be able to have any kind of life partnership with this in the way, and I also don’t know how I could possibly not disclose it. I guess it’s possible that someday I’ll be integrated and it will no longer be a present issue, but even so, it will have been a major part of my life journey that I can’t imagine concealing from someone who would share my life.

So I’ve just sort of given up on my personal life. Not that I needed much of a push to do that, frankly.

  asrais wrote @

People who are new to DID, don’t know how to react to someone with it.
They aren’t sure if they should ask who they are talking to.
For husbands who are having phsyical relationships, it presents even more of a problem. Am I having sex with my partner?
My partner can’t cope with it, so we just pretend it doesn’t exisit. I want to make jokes, to talk about it with him. but, he can’t.
Good article, good conclusions.

  emilylonelygirl wrote @

You are absolutely right…hard for someone to know how to deal with it.

Well, about the sex. My husband knows there is someone in here who loooooooves sex. Get’s turned on in the same engineering stuff he does. I don’t think he particularly cares because there is awareness of the sex, and I am not one of those who has an alter who’s job is having sex.

Sex is one thing that (amazingly) didn’t get messed up in my life, so that is terrific.

Face it, if you want to have sex, what guy in the world is going to care about anything else? 😉

My husband can’t cope either. He knows sometimes when I switch and he has some awareness but it isn’t anything that causes rifts in our relationship (for the most part). So, we ignore, but for now, that is ok.

Thanks for writing in!

  Support System « Learning to Say Yes wrote @

[…] wrote an interesting post on telling your spouse about being DID. In short she comes to the conclusion that as a suvivor part of coping with it is dealing with your […]

  The Zoo wrote @

I was diagnosed just a few years ago. I walked out when I heard the words. I went to a therapist yesterday. I made her gag. I don’t remember what I said. I just recall the wince. They usually just cry, leave the room to find composure, and come back.

I don’t need to see that with my wife. I don’t need to feel that with my daughter. They think I’m broken enough. Right now I am just the father who doesn’t come to swim meets often enough because he is depressed. I will often fake illness as well. I’ve been to a few of her meets and so have my alters.

My daughter has interacted with all of my alters. She knows that I am great with young kids – almost always, so-so with teenagers – sometimes, and terrible with adults – almost always. She doesn’t know that many of my alters are younger than her.

She thinks I am trying to funny I guess. It had to been a little odd that I walked around the house for over a month muttering gibberish with a British accent and talking about my glory days as a pop star. Good ol’ John…

The point is that I can’t tell my wife because my daughter will eventually find out as my wife adjusts her behavior around me. I don’t see how they could handle it. Many of my alters dislike my wife very much. One spit in her face.

She deserves to know. She probably doubts herself and our marriage. But it is a secret that at this point will go to the grave. Knowing how it happened is more important than the fact that it does. The crusade to fix it is inevitable. I am against integration. If I wanted to integrate, disclosure would probably be a first step.

I just know that right now, I’m very aware of what’s going on and it’s a little unsettling. I prefer when I was completely in the dark. My whole system wants to “reboot”.

It’s no wonder I am into marketing. I create brands for a living and in life…

  Emily’s Camigwen wrote @

Hi Zoo – thanks for sharing your thoughts. When I wrote this post, my husband I were having problems about all this. I was in a point in my therapy where things were getting worse before they got better. I think that is probably a normal phase when you really start to realize what is happening and how it affects others. But (for me at least, and some others I talk to), it is a necessary phase of realization and some acceptance. But I won’t mince words – it sucked for me, and was very hard on my husband…because I could not vocalize what I didn’t understand.

My thoughts are different now, and perhaps I should update the beginning of this post to reflect that timing is everything. After I got on a new med and have stabilized a bit more, he and I are much better. I am quite frankly AMAZED as how well he has accepted this! I keep thinking, he is going to think I am nuts based on the stereotypes of this disorder.

My husband is talking to me now – And he tells me now that he was about ready to bolt out of the house because he thought me secrecy meant that I didn’t want to be around HIM anymore. He says that your fear of her rejecting you could cause her to doubt the relationship because she is not fully aware of the basis of your behavior and thoughts.

When it was really just my fear of his rejection of me. Thank god he is not really familiar with the stereotypes…he has told me more than once the past few months that he is HAPPY to know stuff because before he had no clue. So knowledge helps. I have slowly revealed things as events have offered, and bit by bit he is learning. Not all at once, but just explanations for things.

I am not sure if my story now is any help for you – my kids are grown. Quite honestly, I don’t have any personal advice for very obvious switches that your family sees, but I realize that it can be scary and depressing for all involved. So that is why I suggest that you work with a therapist to get a better understanding of your relationship with your family, and how you all can initially accept things. As in my case, real communication came later. The first step was just basic understanding and respect that there is a problem that you are working on. No more details. I am not a therapist, but in my case the best thing was NOT to dump the diagnosis. I am not a therapist, but just starting with some admission that you are dealing with some hard stuff that DOESN’T involve them, and isn’t their fault…that could be enough to help a stable home environment for future work. Please talk to someone about it – I changed therapists a few months back and we have not even worked on the alters and idea of integration of whatever – we have solely been working on day-to-day issues and it is helping with my life and relationships tremendously.

I wish you well, and please don’t discount your family relationships – in my case, sharing with my spouse has been the best thing. But the timing way I did was most helpful

My best
Camigwen


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