Survey Results: Do you have a cover diagnosis for your dissociation diagnosis?

Thanks for everyone who responded to my survey, and my apologies for the lateness in presenting the results. You are a group of sincere and honest folks who tend to caution, with a desire to be understood rather than be stereotyped. You want to share but are somewhat afraid of some negative action/attitude against you. And you all articulate your thoughts very well – clearly a high functioning group.

In reading the survey responses, I realize that a great deal of summarizing is inappropriate because many experiences speak for themselves. I will give some short summaries, but the bulk of this survey will be direct quotes from everyone.

Some information about you

Those of you who responded are an average of 33 years old (standard deviation = 6 years), and your ages range from 25 to 42 years old. 60% of you are working, the rest of you are between jobs. Some of you volunteered your careers: 2 writers, one in real estate sales, one student, one engineer.

All of you have shared all of your diagnoses with at least one friend or family member, but tended to offer one diagnosis in place of another when a DX is needed. DID, PTSD, and cutting were the top three not offered as the primary diagnosis. On the other hand, PTSD was the primary diagnosis used in order to NOT reveal the dissociation diagnosis.

And now on to the detailed results!

What dissociative disorder were you diagnosed with (dissociative amnesia/fugue, DDNOS, DID, polyfragmented DID)?

Complex PTSD: …………..25%
DDNOS:
………………………13%
DID :
…………………………..38%
Polyfragmented DID:.
….25%

What is/are your other diagnosis(es)?

There were about 10 separate diagnoses that I grouped somewhat (e.g., all depression-based diagnoses). This is the percentage of respondents who reported diagnosis of each of the following:

PTSD …………………………71%
Depression
……………….57%
FMS/CFS
……………………43%
Self-injury
………………..43%
OCD
…………………………..29%
Eating disorder
………….29%
Bipolar I Disorder
……..14%

PTSD: Post Traumatic Stress Disorder
Depression = (Major, Severe Clinical, Depression)
FMS/CFS: Fibromyalgia, Chronic Fatigue Syndrome
OCD: Obsessive-compulsive disorder
Self-injury (cutting, head banging)

Do you share any of your diagnoses with friends and family? Yes/No

100% indicate that they have shared at least one of the diagnoses with at least one friend or family member, including DID/DDNOS. (I probably should have phrased this one differently!)

Please list which diagnoses do you share with friends/family (if any)

The table below shows the percentage of responders with a diagnoses who do share that diagnosis. Most responders didn’t report that they restricted who they told about these diagnosis EXCEPT DID. (See below for the DID discussion.)

DID ……………………………100%
PTSD
……………………………80%
Depression
………………..100%
FMS/CFS
…………………….100%
Self-injury
……………………33%
OCD
……………………………100%
Eating disorder
………….100%
Bipolar I Disorder
………100%

On the other hand, while everyone does reveal the DID/DDNOS diagnosis to at least one other person, no one universally shares that diagnosis; all have offered some qualifications about who/when they will share.

Representative answers to whom was told about the dissociation diagnosis:
– “only to husband/sister”
– “2 friends”
– “closest friends”
– “will share very carefully”

There are two common themes for deciding to share DID:

1) The responder already knew the individuals, and that these individual(s) were already known to be supportive. As a result, closeness either grew or receded depending on the receiver’s ability to handle the news.

2) The responder shared with individuals they didn’t know well but who, based on their personality types or experiences, were thought to be open-minded enough to accept it.

Again, did I ask the wrong question? From the free-form responses, for all diagnoses except DID, the sharing of information was not as restrictive or secretive. But for DID, the circle of confidants was much smaller, perhaps less than 5 people each.

If you don’t share all diagnoses, which DON’T you share? Why not? Is it because one is more “acceptable” than the other?

Responses are grouped into three areas: fear for safety, misconceptions (stereotypes) about the diagnosis, and because sharing other less “controversial” diagnoses is just easier. Three diagnoses (DID, PTSD, and Self Injury) were kept secret by at least one respondent.

PTSD: If not PTSD, why not?

Abuse done by family members. Fear blame and revenge from perpetrator.

ŸFor PTSD somewhat “I fear for some reason because of safety.”

ŸStill stigma against rape (rape is primary source of PTSD in women). As a control freak, don’t want to admit loss of control or weakness, because then people will judge me as weak.

DID: If not DID, why not?

1) ….Because of DID Stereotypes

Ÿ”DID is misunderstood.”

Ÿ”I’m afraid people will think I’m crazy even though I know I am not. People generally only know what they see on TV.”

Ÿ”[I am integrated but] I am still wary of sharing my history of DID with most people offline because their impression of DID is represented by movies like Sybil.”

Ÿ”DID can be much more easily misunderstood.”

Ÿ”People might take the DID in their stride, but then show down the line they are making wrong presumption” about things.”

Ÿ”Because my family isn’t all that accepting of any diagnosis let alone one with so much stigma.”

ŸWill not share with friends unless need arises.

ŸEmbarrassed to admit because I am successful. Don’t want to admit anything is wrong with me.

Ÿ”DID can be such an isolating disorder because it is so misunderstood, but it really shouldn’t be that way.”

ŸDissociation is “”scary thing in the closet (or the crazy homeless person talking to themself downtown or in a psych ward).”

ŸFeel sometimes a little like it might turn into Frankenstein and the villagers.

2) ….Because it is easier (or more acceptable) to use other diagnoses

Ÿ”PTSD is something that most people can understand a little better. I want people to know that child abuse results in that level of trauma, so I am open about sharing that diagnosis as a way of educating the public about the seriousness of child abuse.”

Ÿ”Bipolar is definitely more acceptable, so I feel a bit freer to discuss it.”

ŸPTSD “more easily explainable quickly.”

Ÿ”PTSD I find it has the happy effect of shutting people up.”

ŸNot DID so “they also don’t tell me their pet theory on how to mend from it.”

Ÿ”More comfortable telling medical diagnoses because research and medical knowledge can back it up, but not PTSD or DID.”

3) ….Because the need to maintain safety and internal protection

ŸThe idea of multiplicity and “fear … because of safety.”

Ÿ”I’m afraid their reactions might cause upheaval among my internal folks or, even worse, cause some of them to stop interacting with the outside world.”

Ÿ”Afraid to lose job. PTSD more acceptable and explainable. “It is easy to open a conversation about PTSD with young soldiers from Iraq, and PTSD from 911, and then relay that after war, the most common cause of PTSD is sexual assault. In many societies now, the woman is no longer blamed (at least on the surface). DID is in a whole other category – people make it up, it is misunderstood, etc.”

Ÿ”Depends on who I am talking to. Is not related to how well I know them, but more on if they have background or personality to accept DID. (Woman with background in Jungian psychology will understand concepts of fragmented self; creative people (even with no psychology background) tend to be more open-minded and imaginative…higher level of imaginative empathy.”

ŸPTSD “It also puts people off a bit, leaving them feeling out of their depth so they back off.”

SI: If not Self Injury, why not?

Ÿ”[For me] eating disorder and OCD are more acceptable behaviors than SI”

Ÿ”Embarrassed to admit SI (head banging) as coping strategy.”

Ÿ”Want scars to be written off as some accident (mine are not typical cut marks) because SI has horrible stigma.”

Ÿ”Stereotype that cutters are suicidal teenagers rebelling against their parents.”

If you have shared your dissociation diagnoses, how have people responded or treated you? Do you regret revealing?

Negatively: Denial (self or others)

ŸRegret – older friends “became overly concerned…and the relationship changed. “I feel like she looks to hard for the ‘us’, and I can’t just be a me/I.”

ŸThey think I don’t really have it. “She’s never witnessed a switch that she’s aware of therefore I cannot have DID.”

Ÿ”I’m “too high functioning” to be DID. That’s where the movies do us such great injustice. If I’m not like Sybil, I can’t possibly DID.”

Ÿ”Husband says he is supportive but his actions and words don’t match this. I often regret telling him, and now try to hide is as much as possible.”

Initial denial then more acceptance with information

Ÿ”A friend who is a clinical psychologist initially denied I could have it because ‘it is very rare.’ She has become more accepting.”

Ÿ”Initially regretted telling husband who went into shock, withdrew, eventually came around and ‘is now one of my greatest supporters’.”

Ÿ”I have never regretted it.” Although some friends became very curious to the point that it felt like I was more defined by the DID than just as their friend. But after a while they understood how it is for me, that went away.

Positively

ŸMostly a positive experience “except therapist who wanted to ‘prune back the voices.'”

ŸYou need supporters, and online forums are supportive. Not everyone needs to know, but “you gotta be able to tell some people.”

ŸNever regretted it. “But I have lost a few friends that probably weren’t really friends because of it. But strengthened other friendships”

ŸI can be myself around someone more because I found out his ex was a multiple.

ŸI have friends who admit that they know other multiples.. “which leads me to think that if multiples were more vocal, acceptance would become more widespread more quickly than we might think”

Ÿ”The people that I have chosen to share it with have generally been pretty accepting. Most ignore it if they aren’t sure what it’s all about.”

ŸMom is supportive. I was pretty shocked as I had been so paranoid to tell her for a while. But then found out she probably has undiagnosed DID as well, so she has been amazingly supportive. Sometimes I think she “looks” for selves.

If you revealed a dissociation diagnosis AND another diagnosis, was one better received than the other? Which? Why do you think?

Another diagnosis received more easily

ŸPTSD easier to reveal than DID – there is more understanding these days.

Ÿ”PTSD and Depression are always well received. Depression is understood to be chemical and PTSD is “not your fault” and “not crazy”. I think people still think DID is crazy.

Ÿ”PTSD better received. Because I think it is more self-explanatory, and for some reason perceived as more heavy-duty psychiatric disorder that they don’t have a clue about, whereas with the DID people presume they know about it. Seen too many movies like Sybil?””

ŸI don’t really tell either much, but PTSD has been more accepted especially if I say I was raped. I have had massive support for that. For DID, I have told three people – they all support me. They have asked questions sparingly – sometimes I want to explain more and I think they want to ask more, but they don’t. And I don’t want to shove things in their faces. But if a switch occurs and my behavior is strange or unacceptable, that gives me an opportunity to explain (without trying to make it sound like an excuse).

ŸI don’t know how to explain DID and not feel like I am “bombar[ing] people with info when they don’t get it and want to.”

ŸMy therapist initially denied I had DID. I pretty much knew inside at that point it was DID or DDNOS, and I suspected something between the two. I was formally diagnosed by a specialist as having DID. That was one souring point in my relationship with that therapist.

Figured out how to explain DID!

ŸClinical depression received worse than DID because I am not on meds for the depression. “Once I’ve explained DID pretty thoroughly, and explained that there is no effective pharmaceutical intervention for it, people are actually more comfortable with that than they are with what they perceive to be “untreated” depression. ”

ŸI explain DID as “oh yeah, I zone out too and stuff”

Ÿ”I sometimes get the feeling dissociation has kind of hardened me in a way, I realize I often view others as much more fragile than me.”

Ÿ”However, I am very good at explaining DID in a way that isn’t scary or threatening. In a couple of cases, I think I managed to give someone “DID envy,” which is … just plain funny. Many people who meet me are acquainted with my primary alter through my fiction writing, and most people who “meet” him that way are profoundly enchanted with him, so I have a particularly nice segue: “You know how you read that story and said you wished Jack were a real person? Well, he is … he’s just not always around.” And we go from there. :-)”

Ÿ”General dissociation seems to be accepted, but having alters is generally ignored.”

Do you make medical claims for any/all of your diagnoses to an insurance plan offered by your employer?

Most do not want DID diagnosis (and sometimes even PTSD) to be used for medical claims “to a faceless corporation” even though diagnosis information is supposed to be confidential.

One has to because they can’t afford not to. Others admit to being paranoid about it “”I have an excellent private health plan, but I would never make a mental health related claim, for fear of having the policy revoked or changed.”

One relayed that unrelated coverages were denied based on past claims involving antidepressants. One requested (and therapist complied) that PTSD be used for insurance purposes rather than DID due to stigma and fear of reprisals.

Does your employer (not the insurance company) know any or all of your diagnoses? Which?

No employer knows about the dissociation diagnosis, although some know about the PTSD or that the there is a history of trauma. Employers have been mostly supportive, although “In the future though I probably would not disclose except maybe the PTSD again.” One lucky individual reported, “Since I am self-employed, it is easy to keep the diagnosis quiet.”

Have you ever been fired, or in any way been treated differently at work (e.g., job tasks changed) because they knew your diagnosis? How and for which diagnosis(es)?

No one was fired based purely on the diagnosis, but there is significant fear that this could happen if the DX were revealed. No one was fired because DID and PTSD made her unable to cope with the job responsibilities. In others, the effects of the disorder caused them to proactively change their job tasks to protect alters and reduce triggering.

One school advisor implied it was an excuse and took the attitude “you just need to get over it and do your work.”

“I would say that some degree of employment autonomy is essential to anyone living with DID.”

Anything else you’d like to add or that I forgot to ask? Or advice you’d like to share?

Ÿ”Having this cover story is such an issue and such a complex one. I really sometimes wish I could just come out with it but…not such an easy thing.”

Ÿ”Maybe thumb through the DSM, close my eyes and point hope I don’t land on something more complicated and stigmatized lol!”

Ÿ”I think it’s a crying shame. It seems that those of us with DID often find ourselves trading one secret for another. First we have the secret of the abuse we endured. Now we carry the secret that we are DID. It’s not fair.”

Ÿ”Hmm… I’d just like to stress the importance of people with DID and their significant others to research dissociative disorders and reach out to supportive people who understand. It can be a bit of a perilous path.”

Ÿ”I find that what I am more willing to share has a lot to do with what the other person is able to handle. This applies not only to my diagnoses but to the forms of abuse I suffered. I am much more likely to talk about being sexually abused than being ritually abused because more people can handle the topic of sexual abuse than ritual abuse.”

Ÿ”I write about the hard topics, such as animal rape, on my blog to help others who feel unable to share their own experiences. I also write about the hard topics to educate the public. For now, I only feel comfortable doing this under a pen name. I hope that my blog will help educate the public about these hard-to-talk-about topics so it will be easier for all child abuse survivors to talk about their experiences.”

Ÿ”A challenge with sharing is that some parts of me do, and some parts of me don’t!”

Postscript

A note to all of you – THANK YOU for sharing your experiences and your thoughts!

Emily

– ∞ –

See also:
List of all posts

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

Review: Coming Out Multiple – King

The normal world I need in my universe

Should I tell my spouse I have DID?

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5 Comments»

  Samantha wrote @

Again I’m very impressed by your thought and care. Thanks for taking this time and for those who sent in their experiences.

Sam

  davidrochester wrote @

Yes, thank you, Emily. It’s very useful to see the similarity of experience, and to learn from the differences.

  Echo wrote @

It’s interesting to me just how many of us with DID also have fibromyalgia.
My original diagnosis was fibromyalgia back in 2001. I wasn’t diagnosed with DID until this past March 2008. I went to the psych for depression. Well, actually I told my GP I wanted to see a psych because I was becoming more and more aware that my assumptions of what’s going on were not what was going on, but when I told my GP I was depressed he just prescribed me an anti-dep and wouldn’t refer me. I went back and told him that I’d remembered something traumatic and really REALLY wanted to talk to someone and he sent me, and they agreed there was depression but because of my moments of fugue and my journal he agreed I should see a counselor and she diagnosed the DID a few months later.
I have several associates who assume me to be bipolar. I haven’t really bothered about a cover-diagnosis; but if I’m going to be going back to work I wonder if I should because once I get some hours wracked up and some money stored I do want to go back to therapy. However it’ll depend on what’s going on, really. On the one hand I think it’s no one’s business, on the other hand I get very annoyed when I think that I may have to make something up…I’d much rather just be like hey it is what it is…but that also depends.

  emilylonelygirl wrote @

David and Samantha – you are welcome – I was very interested in the answers, and I learned some things I didn’t expect. Good stuff.

  emilylonelygirl wrote @

Echo

I was diagnosed with Fibromyalgia in 1995. While it still had significant stigma. I have seen info online several comorbid conditions like FMS. Shortly after, I was diagnosed with Rheumatoid Arthritis and had several bad years. I have been in remission, and sometimes even wonder if it was all true. Like DID I suppose – in denial until something else smacks you in the face.

Interesting you should mention journal…that is one of the few things that keeps me linked to accepting the DID diagnosis….years of diaries lamenting that I felt like 2 people. That I knew I had made important decision but couldn’t remember them. I am SO happy I didn’t throw them away. For me they are evidence, and it seems they were for you as well to get referred. Annoying!

Personally, I might consider using bipolar…could be me…I know a couple people so diagnosed and they are open about it and also are very good and their jobs. Maybe there is more acceptance for the DX than I thought, or perhaps they are very brave. I give them credit.

Good luck with the back-to-work situation!


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