To diagnos, or not to diagnose?

At the moment, myself and Kat are considering the pros and cons of getting a formal diagnosis of DID. Kat was very brave and managed to get through the DES test, scoring at a 63. It was frightening, but helped with her sense of validation, and the apparent anonymity gave her a feeling of safety.

After scoring a 63, however, she is facing the very real likelihood that this is indeed reality and all of us are real, and that that's okay.

She is unconvinced on the last aspect of that.


So now I turn to you, members of the forum, diagnosed or undiagnosed or even singletons who are familiar with DID in a friend or loved one. Do you feel it is important to have a formal diagnosis? Why or why not? How can a diagnosis help? How might it do harm?

Kat's primary concern, and frankly I feel that it's important and needs an answer, though I think she is more worried than she needs to be... Would coming out and being honest about her mental condition threaten her legal qualifications to be a parent? Her greatest fear, and a concern of mine as well, is that in a custody battle for her children, such as if something happened to her husband and taking over full care of and adopting her step sons, could a diagnosis of DID be used against her in a court of law?

We recognize that actively hiding it is more harmful than anything, yet wonder if it is truly needed to have a diagnosis on record. With supportive friends who also face similar challenges to talk to and lean on when life has its normal downs, and considering none of us have any interest in clinical therapy, Kat herself being terrified of even trying and the rest of us simply doubt most Doctor's dedication, not to mention the costs with no insurance and current financial struggles... Would it even be worthwhile to try?


Apologies for long windedness, and appreciation for any feedback.

~Naurore

To us getting a diagnosis has had pro's and con's

On the pro side are for instance the validation of a sort of normalcy for our symptoms, harder to end up in denial, by getting a diagnosis it's easier to work properly in therapy (unless you find a T who doesn't care to set a diagnosis but still work on the DID itself) and it helped us be taking seriously when we had to be in-patient. Also, it's good to have a diagnosis in case a new host comes out and just up and leaves the life we have with no idea who they are for instance (to take it to the more extreme).

On the negative side, in this country, with DID - you can't get insured. There's a problem with people disbelieving it and having health professionals not treat us right.

These are just a couple of things but for us getting a diagnosis was important just to feel validated somehow.

Best of luck with your decision.

lifelongthing wrote:To us getting a diagnosis has had pro's and con's

On the pro side are for instance the validation of a sort of normalcy for our symptoms, harder to end up in denial, by getting a diagnosis it's easier to work properly in therapy (unless you find a T who doesn't care to set a diagnosis but still work on the DID itself) and it helped us be taking seriously when we had to be in-patient. Also, it's good to have a diagnosis in case a new host comes out and just up and leaves the life we have with no idea who they are for instance (to take it to the more extreme).

On the negative side, in this country, with DID - you can't get insured. There's a problem with people disbelieving it and having health professionals not treat us right.

These are just a couple of things but for us getting a diagnosis was important just to feel validated somehow.

Best of luck with your decision.

May I ask which country you are in that it affects insurance so negatively?

We do have at least somewhat of a backup in case of host changing. As it is, Kat is rather unsure of herself, but if and when necessary, I can and occasionally have stepped forward to take on the role of host. It is awkward in the sense that I don't like our legal name, but I know our daily habits well enough to cope even long term. We have had very little change in our primary system and have done well to hide ourselves over at least two decades that we have been in this sectioned state.

Really, the only reasons we have finally come out insofar as we have is because of some domestic troubles in our marriage and accepting help when we learned Kat's best friend, also a good friend of mine, that we have known over a decade, told us about a family member with DID and has offered much needed support and acceptance.

I'm sorry but I'm not comfortable writing on here what country we're from, sorry.

I'm glad you have a system in order that works. I think it's up to you then what you feel is necessary for your own peace of mind, if nothing else

personally to us, no matter what cons there might be, we say diagnosis should be gotten. because for us, the pros outweigh any cons there might be.

pros:

1) can help with denial (might not make it go away, but it can help make it harder to believe)

2) can help with other people questioning you if you have professional "proof"/a certain diagnosis

3) can help you get the help you need and have therapists paying attention to you and knowing where to start with you and how to help you

4) with a certain diagnosis, where we're at, it can help you qualify for programs that can help you afford therapy or even disability and other such things

5) validation for us and for our friends that believe us and our SO


i think that's it, i'm not sure, but yeah, to us, we really want a diagnosis, and believe it would help a lot more than it would harm.
(i dunno what country it is that has that insurance issue, but i haven't heard/read anything about insurance stuff like that where we're at. i think here all it does is possibly put your license into question and they might make you retake the test or have a note saying you're mentally stable to drive or something but that's it. nothing about insurance stuff far as i know).


- cassie (age ?)

The Dissociative Identity Disorder Sourcebook by Deborah Bray Haddock published in 2001
mentioned insurance issues. I believe it was refering to the US in particular but I wouldn't be surprised to find insurance companies are pulling this in other countries too.

I'm not aware of any insurance issues here. For what I've read, I think insurance is pretty well organised here (I'm not aware of any issues...)

I don't yet have a DID diagnosis, but I do have a preliminary DDNOS diagnosis. Whatever I/we end up with (DDNOS, DDNOS-1 or DID), I/we'd rather have an official diagnosis because that helps with:
- validation, that the experiences are real
- denial (well, keeping it low)
- knowing I'm not 'weird' (that it is something many people have)
- easy to explain. Much easier to say 'I'm DID/DDNOS/whatever' than 'I have this dissociative thing, not sure which, but I have weird thing a, b, c, d, ...'.
(most has already been brought up)
Think that's it. I don't really see any downsides.

I wanted a formal differential diagnosis, the result of a methodical process of evaluation by someone with relevant training and experience, and using the best available tools. After that was complete I obtained a detailed treatment plan. This is all good.

Then there is the separate matter of a diagnosis being a kind of "label". I don't need to be labeled. For insurance purposes, the therapist can use a diagnosis of trauma disorder (eg PTSD) or anxiety disorder, or whatever, if that makes a difference.

I think for all of us, Kat especially, the biggest concern is how being labeled DID affects how she/we will be viewed on a daily basis. We've hidden for so long, the idea of being upfront is a big step. Our system has shifted and changed over the years, but it's been there in some form or another for over twenty years. After that much time, it seems especially daunting to suddenly be open about things.

More than anything, the concern is this: Will we be viewed automatically as an unfit parent? Maybe some of us in here aren't the best with kids, but those that are always come out when parenting is needed. But the world is often very hostile and judgemental when someone doesn't fit the norm. Particularly here, in the "Bible Belt" of America, people can be rather cruel when something doesn't fit into their bubble of "normal" reality.


Have any DID parents here faced such judgement?


~Naurore

I am not in the market for a diagnosis right now. Part of the reason is that there aren't any ISSTD therapists in my area, so I am a little wary of it. And part of the reason is that I don't think I could tell anyone about what's going on - a lack of trust thing. Part of the reason is that, like you, I don't know what the implications of such a diagnosis would be. And the final reason is that I'd want to be sure this is right before I go so that I'm not disappointed when I find out the results. When I take the DES, it doesn't elevate over 30, but this feels right to me. (And we like being here...)