What is your “cover diagnosis” for dissociative identity disorder?

If my employer knew I had a primary diagnosis of dissociative identity disorder (DID), I would probably not be fired, but I would role in the company be changed? But how could they find out? Well, since I am not made of money, my employer pays for my therapy. But nothing is truly confidential. So my cover diagnosis is PTSD (Post Traumatic Stress Disorder).

Am I being paranoid? Because PTSD is more “acceptable” disorder if my diagnosis leaks out? Does DID somehow have more stigma associated with it than PTSD? What do you think?

Paranoia for admitting DID?

“Cover story.” The story you concoct to cover up or hide something. You know, when someone is cheating on their husband. When someone is stealing funds. When someone wants to go play golf rather than doing the yard work. But whatever the situation, it implies something bad, right?

Online, I have seen others admit they’ve told friends about their bipolar diagnosis, but not their DID diagnosis. Their PTSD diagnosis but not their DDNOS diagnosis (Dissociative Disorder Not Otherwise Specified). It seems I am not the only one who has opted to keep the DID diagnosis a “secret”. Englishrain also mentions that “bipolar or schizophrenia seem to be the going socially-accepted diagnoses for people who actually have DID.” I wonder how many people consciously do this and why. It isn’t too hard to hide DID.

80-100% of individuals with DID have a secondary diagnosis of PTSD. Other diagnoses may also be present (e.g., bipolar disorder, major depression, obsessive compulsive disorder, and generalized anxiety disorder).. [PsychCentral]. So we don’t really have to “admit” DID because there is generally another diagnosis to fall back on.

I think I’ll run a survey on this blog. I am really curious.

Am I the only one with this fear or this is a concern for many people? I think it’s common because I used to have misguided ideas of what PTSD and DID were. And now that I am more informed, I realize that 1) my ideas were stereotypical and 2) others probably operate under the same stereotypes. Hence the need for a “cover story.”

I don’t think I am paranoid, as I believed the stereotypes until I was diagnosed. I didn’t suspected either when I started therapy.

In the Real World – what was wrong with me?

Periodically throughout my life I have researched trauma and rape, sometimes chasing symptoms thinking I was crazy. Periodically I would “come up for air” and compulsively research a suspected diagnosis. Was it bipolar (at the time named “manic-depression”)? Schizophrenia? Convinced there was something really wrong with my head. I kept those fears secret.

After I started therapy, my therapist recommended Judith Hermann’s book on trauma and recovery which I devoured. I was surprised that many women who have been raped ended up developing PTSD.

I was shocked – when I’d researched years before, the terms “rape” and “PTSD” were not even mentioned in the same sentence. Now suddenly (to me), the two were intertwined. I’d believed the stereotype – soldiers coming back from war got PTSD. “Shell-shock” they used to call it, and PTSD was just the politically correct name for it. I had no idea that the two most common causes of PTSD (by far) are war followed by rape. Wow.

But not much had changed in the Real World, where talking about rape is still somewhat taboo. While more and more people have an “enlightened” view, there are large pockets of resistance – those “she asked for it” believers. The “she shouldn’t have worn that; she shouldn’t have gotten drunk.” As a very smart man once said, “A woman should be able to walk into a biker bar naked and nothing would happen.” Well, yeah, but she’d be fcking stupid. Both he and I agreed. And that leads to another stereotype about bikers and biker bars. And so on.

So I continued to keep my “past” out in conversation, and have even declined mentioning it to others who shared their similar experiences with me. Embarrassment. Shame. I *still* think people will “feel sorry” for me that I am somehow “weak.” And I refuse that label so I am still nearly silent. In the Real World.

In the World Wide Web – NOTHING is wrong with me!

But after surfing in the privacy of my own home, I found that the internet was full of information! Online I was anonymous – I could ask questions and share. Many websites dedicated to information, treatment options, and recommendations for therapists. Amazing that the flurry of electrons in and out of my telephone cable (and now my wireless high speed internet connection) could open up a whole new world! A world where I didn’t have to couch my thoughts and feelings – because these people supported me unconditionally.

When my therapist finally told me my diagnosis, I knew what she would say. I had never raised the issue, and she had not volunteered it. Until the day I blurted out, “What did you tell my insurance company?” She said, “PTSD.” Yeah, I suspected that. And it was sort of a relief, but in a way, a mantle. Until I researched it more.

The internet showed me that the subject is no longer taboo. At least online. The stereotype about PTSD still exists, but the general population seems much more willing to accept the disorder in light of events like 9-11. Hurricane Katrina. Oklahoma City bombing and the Columbine shootings. Horrific and devastating events that shatter people’s lives – these all can (and have) resulted in cases of PTSD.

It is becoming clearer to the general population that PTSD can be caused by a terrible event that is not your fault. And that’s the clincher – there is NO WAY anyone would deny to a 9-11 survivor that the attack could REMOTELY have been their fault. But rape, well, that is still in a different category. After all, why was she walking out at night, right?

Recently I had to write down what had happened to me. I still have extreme difficulty writing or using the word “rape.” Saying “PTSD secondary to sexual assault” seems less “bad,” but then hell, why should I be sanitizing it for anyone else? It was not “sanitized” for me.

Multiple Personality Disorder means you are Sybil

So, back to the cover diagnosis of PTSD. My insurance company knows only about the PTSD, and it would probably be okay if my boss/co-workers found out. Ideally they should never find out unless I say something, but if confidentiality were somehow breached and they knew, I don’t think I would be shunned.

But what about them knowing the DID diagnosis?

Now that is a whole different can of worms. I sincerely believe my boss/co-workers would have extreme difficulty with that one.  But it’s not really their fault – let’s look at the stereotypes for THIS diagnosis.

First, DID used to be known as Multiple Personality Disorder. And what do you think of next? Sybil and The Three Faces of Eve. Extreme presentation. Sigh. There is a word to describe that – “florid.” You can surmise what that means…kinda like being gay and completely out of the closet, marching in the parades with the rainbow T-shirt and kissing your significant other in the middle of the street. Hey THAT IS FINE – knock yourself out as long as you are not hurting anyone. But most of us with DID are not florid -we are like most of the gay and lesbian population who are not overt about their lifestyle. It is what it is. Live your life and brush aside those who insist on telling you what you are or are not.

If you can. If they let you.

And that’s why the stereotypes based on the phrase “Multiple Personality Disorder” can be so damaging. Even more so than the old thinking that the rape victim “asked for it.” Rape victims are not assumed to be possibly serial killers. The idea of “crazy”, “mentally unfit” with “no control over their actions.” My recent post, Dear Ms. DID: Is someone with DID psychotic, a neurotic, or just mentally unfit?, illustrates that some Human Resource professionals continue to hold these ridiculous beliefs. So NO WAY do you want to admit to “being like that.”

Around [1994], MPD was renamed DID in DSM-IV to reflect that fact that additional “new” personalities are not “in there” sharing a body with the original person, but that the individual has fractured in some way to encapsulate the trauma in order to live. ** The individual had to dissociate significantly – separating one set of memories in experiences from another. In order to survive. I could go on here about what DID is and what causes it, but that is all over the internet – severe or repeated sexual trauma, often before the age of 6, in children with a high capacity to dissociate. Not the kid’s fault. Obviously.

But what about this whole Sybil thing? How does the average moderately-informed person make the mental transition from Sybil to a traumatized child? From psychopathic and untrustworthy to a little kid you want to hold and hug?

Dissociative Identity Disorder means you are not so nuts

Now, I think the change from MPD to DID helps with the stereotype for a couple of reasons. First, the “less informed” (i.e., more likely to believe the stereotype) don’t know the new “secret password.” DID doesn’t carry the baggage that MPD does. Second, using DID rather than MPD is more “friendly” and does not imply that multiple “people” exist. It is less threatening. It is still a “disorder,” but to the lay person, what does “dissociation” mean? Here’s a definition:

“Dissociation is a word that is used to describe the disconnection or lack of connection between things usually associated with each other. Dissociated experiences are not integrated into the usual sense of self, resulting in discontinuities in conscious awareness.” [ISSTD]

Doesn’t sound so Dr Jekyll and Mr. Hyde, does it?

So Viola! Stereotype eliminated!

So back around full circle. With this magical new less-bizarre-seeming name, am I now willing to submit claims to my insurance company that read DID rather than (or in addition to) PTSD?

Hmmm, logic dictates that I should. But deep inside, I still cannot.

What happens if your employer knows you have DID?

The Dissociative Identity Disorder Sourcebook [Haddock] discusses insurance, employers and confidentiality. To be approved for therapy, therapists generally have to provide information to insurance companies.

“The therapist will also give a diagnosis and discuss the goals of therapy. The client, however, is the one who will need to decide whether she wants the insurance company to have this type of information.

Once the information leaves the therapist’s office, the ability to control confidentiality is lost. The client does not know who at the insurance company will have access to the information or when doctors, lawyers, or new employers might request information. Granted, release forms have to be signed for medical records to be copied, but can you imagine telling a new employers that you refuse to sign the release?” [Haddock]

Here is another great article talking about confidentiality – what is possible and how to avoid it. If you can. Best Practices in eTherapy. Although the title implies it is only about online counseling, it also addresses regular face-to-face counseling. Often, there is not much you can do about possible breaches in confidentiality, but at least you can be aware of them. A big one is just nosy people in the office who see the charts for billing purposes. Or charts left out in the open or in unlocked drawers. It is, unfortunately, pretty easy to see files of you want to. (I should say that HIPAA seeks to close some of these problems by removing personal information from files, keeping files locked, to avoid “accidental” exposure, etc.)

I still believe that my boss and co-workers would still think I was somehow not capable of doing my job. That I could be untrustworthy. That I should now be under some suspicion even though I have performed to very high standards for years. You know, because I could snap and cause embarrassment. I could damage company property.

So what do I do? I continue to use the diagnosis of PTSD rather than DID. For as long as I can still get medical coverage, PTSD is my public “cover” diagnosis that I can “explain” if I need to. Because I think people can accept PTSD secondary to rape as “not my fault,” perhaps even more than just “rape” itself. (Screwed up, isn’t it?)

I told my meds doc about this concern of mine – having a diagnosis of DID anywhere near records for my employer. He scoffed and said, “But DID is not much further down the dissociation continuum than PTSD.”

“To you perhaps,” I told him. “You are an MD and an expert in the field. Very few realize this or would accept it.”

He rewrote my medical claim receipt for PTSD.

Diagnoses and Misdiagnoses for DID

So what are all those possible secondary diagnoses that we may be using to avoid naming DID? Here is a smattering of information and references.

From BipolarCentral: “80-100% of people diagnosed with a Dissociative Disorder also have a secondary diagnosis of PTSD.”

Also, “It is estimated that 3% of American adults are affected by DID. Up to 7% of the adult U.S. population may have suffered from a Dissociative Disorder at some time, but since this disorder often goes unrecognized, it is difficult to estimate the prevalence.”

At PsychCentral (this is a good article), the following are listed as Coexisting Diagnoses (when they truly exist in addition to DID) or Misdiagnoses (when these are diagnosed in place of DID when DID is the true diagnosis). [Steinberg] Major depression, Generalized anxiety disorder, Bipolar disorder, Attention deficit hyperactivity disorder, Obsessive compulsive disorder, Eating disorders, Substance abuse disorders, Sleep disorders, Impulse control disorders.

DID is often misdiagnosed as bipolar, post-traumatic stress or other mixed syndromes containing dissociative elements. But this does not mean that these other disorders don’t exist in concert with DID as a dual diagnosis or one secondary to the other. WrongDiagnosis has some interesting information about DID including misdiagnoses.

I also wrote about diagnostic confusion in this post Dear Ms. DID: Regarding a dissociative episode and diagnoses vs Bipolar III and PTSD.

Another complication is that individuals who are eventually diagnosed with DID initially complain of other problems; for example, ­depression, mood swings, gaps in memory, temper outburst, and hearing voices. Individuals may be in the mental health system for on average 7 years before receiving an accurate diagnosis. [Sidran]

So do you have a cover diagnosis?

I did an internet search and found some anecdotal stories about what people tell their employers, but there is very little out there. I quoted Englishrain above.

An individual commenting to the post Honesty Is the Best Policy………Or Is It? said that they prefer honesty in all things, and lamented that our society really does not reward those who are honest. One writer found that honesty about her diagnosis with friends and family cause them to back away. Another complained that honesty actually made things worse –

I’m not going to be honest with my employer about having bipolar disorder for instance, because I’d probably lose my job … I rarely directly lie, but I do have a policy of “don’t ask, don’t tell.”

A survey

Do you have another diagnosis in addition to any in the dissociative spectrum? I’d like to post a completely unscientific survey about your diagnoses and if you share one or all.

I have placed the survey in a different post so it is easier to find and answer – Here is the survey.

References

Steinberg M. (2008). In-depth: Understanding Dissociative Disorders. PsychCentral, accessed online from http://psychcentral.com/lib/2008/in-depth-understanding-dissociative-disorders?pp=2

Sidran Institute. (1999). What is a dissociative disorder? accessed online from http://www.sidran.org/sub.cfm?contentID=75&sectionid=4

Essortment (2002). What is dissociative identity disorder? accessed online from http://www.essortment.com/all/dissociativeide_rhqt.htm

Haddock DB (2001). The Dissociative Identity Disorder Sourcebook. McGraw-Hill.

**As an aside, there are some who maintain that MPD and DID are actually separate diagnoses, based on what age the first trauma occurred. But that is beyond this discussion.

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4 Comments»

  Jennifer Baxt, NCC, DCC wrote @

I think this post brings up an interesting topic on how much is private or public. I have counseled people through their insurance companies and every so often I have to fill out forms. Well, I always do this with my clients because they have the right to know what is being said about them.

Not all therapists do this, but now I have an online counseling site and it confidentialty gets better instead of worse. I do not report to insurance companies and I keep all the files to myself.

I hope that anyone that has a problem could talk about it in the open, but the reality is that we are a judgemental society. I hope that you and your therapist work through your thoughts and that blogging about it helps.

Jennifer Baxt, NCC, DCC
jennifer@completecounselingsolutions.com
http://www.completecounselingsolutions.com

  emilylonelygirl wrote @

Jennifer,

Thank you for your comment – it is good hearing from a therapist that these issues are a real concern. I checked out your website and I was honestly surprised at the services you offer. Maybe I am just clueless, but I never even realized this was a possibility. But it makes perfect sense – initiating therapy is intimidating and it kept me out of the office for probably 20 years. Such a shame, the stigma, even if it is only self-imposed.

You make a good point – some people can express themselves better through the written word. I am like that – email is my preferred method of communication. I “dry up” in the therapy room sometimes. And you noticed that as well – this blog is part of my therapy. To take what I research for myself and throw it out to others gives me satisfaction – that I can help others.

Good luck with your online business – I bet a lot of people may seek help with these new options available.

Emily

PS – good luck with dissertation! I could not WAIT until mine was done, but then, relief!

  Tigerweave wrote @

Emily,

I think slightly differently to you about my diagnosis, though I have no idea how others, particularly mental health professionals would regard my view.

I feel that in my case, my primary diagnosis is PTSD. It is trauma that shattered my personality, and it is trauma that I needed to create the survival system of DID to be able to survive.

Hence I feel that I have PTSD, and one of the main symptoms is DID.

Another reason I feel this way is that to my knowledge, most of the counselling I have had has been addressing the trauma and the reasons *why* I fragmented. To do this, the dissociation of DID has had to be addressed, certainly. But mainly, I think, to allow myself to access the trauma held within the different selves I created.

But the healing of that trauma, once accessed, has been done by using the original techniques for treating PSTD (exposure therapy, EMDR, CBT etc) that I learnt way back when I first realised my inner pain was caused by childhood trauma.

As you know, I recently integrated, and have to a large part stayed that way. The integration was a shock, and happened as a result of an extremely powerful therapy session, where we dealt directly with the traumatic experience that was the reason *why* I could not tolerate integrating.

Again, the therapy was for trauma. It wasn’t about “Let’s integrate you.”

Once that trauma had been dealt with, I spontaneously integrated. Trauma. It all comes back to trauma. For me, at least.

I am happy with my diagnosis of severe PTSD. Yes I have/have had DID as a part of it. I fortunately don’t have your issues surrounding work, and I have a lot of support in my everyday life. A lot of people who love me dearly have walked by my side through the process of healing, (Including, once I met you, yourself, dear Emily 🙂 and they know through that about the DID. I don’t feel I am using a covering diagnosis to say I have PTSD at all, just simply not going into the finer details.

Lastly, re your conversation with Jennifer Baxt, I thought your readers might be interested to know that I found each personality had a prefered method of dealing with their trauma. Some liked talk-therapy. Some liked writing. Some liked art therapy. Some simply couldn’t be helped by art therapy, some didn’t want to ever have to speak out loud about their experiences.

My journey of healing has taken me through many stages. It is good that there are many options for help out there. None of us deserve to stay in pain that was so cruelly inflicted upon us.

I loved your imagery of “From psychopathic and untrustworthy to a little kid you want to hold and hug?”

Incredibly powerful

Anna

  emilylonelygirl wrote @

Anna,

Your comment is a wonderful description of how it has been for you. Thank you so much for sharing your experiences – they are very valuable to me, as you are further along than I am, and hopefully to others.

I have never heard anyone talk about PTSD secondary to DID. It makes PERFECT sense tho! I don’t want to put words in your mouth, but I can see how finding out you have DID could CAUSE PTSD as a result!

And that the “presenting personality” who initiates therapy is trying to deal with something distressing (like in my case, having the rape come up and slap me in the face again), and gets the PTSD diagnosis. And then only after therapy and moving away from denial, does she realize all the evidence of DID that she has ignored.

So, sorry, engineer…
Trauma->DID->therapy->diagnosis of PTSD->removing denial of DID->realizing trauma/DID caused PTSD in the first place.

I like it!

Thanks for the wonderful insight!

Emily


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