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Old 01-11-2018, 09:54 AM   #1
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Shocked T Told Me I Have DID (LONG)

Yesterday, my t told me I have DID. I'd been suspecting it for awhile, but kept thinking that I'm too high-functioning to have it. I have always worked a full-time job. Also, I exercise strict control over other parts of me. I do everything I can to hide those parts that could cause me embarrassment, shame, or make other people think I'm odd. Usually, the worst thing people notice about me is that I am very forgetful and don't notice things around me visually. At times, friends and even acquaintances have been offended when they said they saw me and I didn't speak to them. They assumed I was being snobbish when I actually didn't even realize they were there.

But besides being forgetful and kind of spacy, I doubt most people would suspect that there's something really wrong with me mentally. Part of that, though, is that I am good at keeping things superficial and not getting too close to people. I usually do not talk about my deeper thoughts or troubling feelings. There have only been maybe 6 people (that I know of) who definitely saw me when I switched. But those people seemed very surprised, worried, or disbelieving because I seemed so unlike myself. In one particular case, where I really opened up about my problems over a long period of time to a close friend, things ended very badly.

So anyway, I thought maybe I had DDNOS, but probably not DID, also because I don't show the extreme manifestations of it, like suddenly "coming to" and not knowing where I am or how I got there. My t and I both have known for a long time that I have dissociation problems though. My official diagnosis is C-PTSD. But I've been afraid deep down that maybe I do have DID. I asked my t about it several months ago, and she said she thought it was "a fair diagnosis." She didn't actually come out and say I had it, though, and I was afraid to ask anymore about it.

Recently, my t and I started going through the workbook "Coping with Trauma-Related Dissociation." We are only in chapter 2, but it has already discussed that dissociation exists on a continuum from normal daydreaming all the way to DID. It mentioned the difference between DDNOS and DID also. Since we were going to review the chapter, I decided I was going to come right out and ask her what my diagnosis is and if I have DDNOS or DID... or just the kind of dissociation common to C-PTSD. She told me I do have C-PTSD, but I have DID too.

She said she has not written down DID officially as a diagnosis when she bills my insurance company because she is not sure they would pay it. She has only my C-PTSD down. She said she can add DID, though, if I want her to. I said No, I don't want her to. If, down the road, my insurance doesn't want to pay for therapy anymore because they say I have been in therapy too many years already, then I would be willing to have her share my DID diagnosis if that would justify the need for me to continue therapy.

Although it didn't come as a surprise to me that I have DID, I feel kind of uneasy now that it has been verified. One part of me keeps thinking there's no way it could be true. I'm too high-functioning. To another part of me, it makes sense and explains why I've struggled with so many issues and have been in therapy so long, despite how hard I try to get well!

Before knowing about the DID, I felt a lot of shame over why I can't do more, get well faster, be stronger. I've felt that there is no excuse why I can't act and feel like a normal responsible adult all the time! I get disgusted with myself for being forgetful and spacy. When I do something dumb as a result, especially in front of people, I've felt embarrassed. I'm talking about stuff like trying to get into the wrong car, not remembering faces of people that I should recognize, or (gasp) the rare occasion when I get triggered and break down sobbing so hard I can't breathe, and can't seem to quit. I've only done that two or three times in front of people other than my t and my husband. But again, when I did, I saw their reactions. On one occasion like that, the person who was with me seemed to totally avoid me after that.

I'm rambling. I'm sorry! I don't even know what I'm trying to say, or what I need from you guys. In some ways, I'm doubtful. In some ways, I'm relieved. And in other ways, I feel really scared!

Do you think my t should add DID to my official diagnosis for my insurance company? Or do you think it would be disputed or require a bunch of extra evaluation, etc. for them to approve continued sessions? Do those of you with a DID diagnosis have it officially written down in their records for insurance purposes or not?

I'm surprised I am feeling this scared about having the diagnosis, seeing as I have suspected it for awhile.

There's no way I'd ever tell my parents or sister about it. They are all completely disregarding of my problems with mental illness. They avoid mentioning it at all or acknowledging that anything is wrong with me. They never mention the word therapy or ask me anything about sessions. I've mentioned here and there things about my depression or anxiety, or something I learned in therapy, but it is followed by dead silence.

A couple of times, when I tried to talk to my mom about my issues, she said nothing happened to me as a kid that would have caused any mental health problems. She said, "It is just your hormones. One day, you will wake up, and it will be gone." She also told me "I think my childhood was a lot more unusual than yours." Also, nobody in my family ever mentioned anything when I was hospitalized on a 72-hour hold back in 2002 for feeling suicidal. My husband told them about it, but they never mentioned a word to me about it, didn't ask why I felt so bad, what they could do to help, etc. Just...nothing. Like it didn't happen. That's kind of how my family acted when I was a kid and bad things happened. The next day, everybody would pretend nothing happened. It really messed with my head.

I apologize this is so long. Thank you for anybody who actually made it to the end of my message.

I don't know what to think. T says I have DID. FOO doesn't believe anything is wrong. Different parts of me feel different ways. My husband knows I have a dissociative disorder and has seen different parts of me. He doesn't know enough about the various diagnoses to know whether I have DDNOS or DID. He just knows it is a real problem for me. He says it doesn't make him love me less. He says he is more worried about me not accepting it.

Can somebody here reassure me or give advice or something? A part of me is really feeling scared.

Last edited by peaches100; 01-11-2018 at 10:10 AM..
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Old 01-11-2018, 11:54 AM   #2
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Default Re: T Told Me I Have DID (LONG)

Well, I may ramble a little too as I can really relate. Please take what I say as my experience of mes. First, IMHO you don't HAVE DiD. It's not a disease. DID describes how you function in this world. It's the reason you are so high functioning inspite of the blows this world subjected you to. BTW there really are a lot of us out there. People were always amazed at how much I could get done. I thought others were lazy or not trying. I don't get too close to people either for fear they will notice my differences. Recently, was out to eat with a group of neighbors & one mentioned I ordered something I told her before I didn't like. Panicsville! Then a normal said he didn't like it usually either but this restaurant made it just like his mother used to. Relief! There is nothing to be afraid of. The dx isn't going to change anything. You are well experienced being a DID! You have done it for years!! I've learned normals get spacey, misplace things, have trouble dealing with life and seek help. That new revelation came yesterday waiting in my T's busy office lobby: bet all of these people are normals..why are they here!!? Can't think of anything DID s do that normals don't do..maybe for a shorter time period, not as often, or not as well!
I would not add it to your insurance unless there was a problem with coverage as you mentioned. I operate on a need to know basis. Do they need to know? If not, it's none of their business.
I almost want to say welcome to the DID association..we are few but we are amazing!
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Old 01-11-2018, 03:23 PM   #3
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Default Re: T Told Me I Have DID (LONG)

Hi peaches, I would not ask to have the diagnosis recorded if you are getting therapy paid for already.

I relate to being so high functioning that my own DID diagnosis doesn't make sense. In fact, I have recently had a big come apart with my therapist over this because I no longer even think I have DID--there is literally no sense or evidence of it in my view--but she says I do and doesn't think I can do well if I try therapy by ignoring it. I didn't ask her, but it seemed that she has seen and experienced enough about me to cause this belief. On my end, I no longer see it and can't even grasp how it was I have been doing DID treatment for the past year and a half.

I came here today to see if there was anyone who had been diagnosed and treated for DID and then suddenly believe that it was a wrong diagnosis, so I apologize for bringing it into your post. But I think it speaks to the confusing nature of DID, especially for those who, as my therapist puts it, place a high value on functioning. I would cut off a limb in order to keep life running smoothly, if need be.

In other words, I think it's normal to question and good to question. The main thing is finding out what kind of treatment works for you, and if it's based on DID, then that's what matters most.
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Old 01-11-2018, 05:09 PM   #4
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Default Re: T Told Me I Have DID (LONG)

I got a friend that worked at the funeral home. T thought she was high functioning , but it turns out that doesn't matter the mind/brain is very fragile if too much around those symptoms it can be a very quick fall to something extremely traumatic before recovering the kids traumas and the significant traumas along the way.. As for advice I'd just generally try to keep away from things of the senses until a certain point where you and system is safe to remain high functioning to do a reintro etc to the world.
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Old 01-11-2018, 05:29 PM   #5
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Default Re: T Told Me I Have DID (LONG)

So much to respond to in this thread!
Peaches, when I was first diagnosed it freaked me out even though I had suspected it for a while too. Having someone tell me "You have DID" made it all too real in a frightening way for me. I keep wanting to say "Uhhhh,.... really??"
I think that was partly because I had the idea that DID was this thing that was portrayed in the movies and books and I am -nothing- like that. I would have called myself a high-functioning social avoidant neurotic if anything. But what you see here with me {does a twirl} is what DID looks like apparently. This is it. Well one of the ways DID manifests itself in apparently normal people anyway. It doesn't come with bells and whistles on, just years and years of hidden-from-the-world pain.

Ruh roh, yesterday the alter who fronted at therapy doesn't believe she has DID. it was the first time she had been to t for a time long enough to sustain back and forth dialogue and T did her best to help her connect to us others. She just can't. She needs to live her life, to work, to play, to live, to be normal. She told t if everyone else would just go away she would be fine because that is the truth I suppose. You say you "suddenly" believe this is the wrong diagnosis. Does that mean that up until very recently you believed it was right? I wonder if you know what the difference is between now and then that made you change your mind to believe it is now wrong.
Because you know I hate to point it out to you but believing it was right and now believing it is wrong is kind of.... well case in point, really.
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Old 01-11-2018, 06:53 PM   #6
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Default Re: T Told Me I Have DID (LONG)

I have DID and have always functioned well and always been employed full time But I have ablut 40 alters. very DID, and very functional
Having DID is ok. youre still who you always thought you were. its just a label.
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Old 01-11-2018, 07:15 PM   #7
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Default Re: T Told Me I Have DID (LONG)

Quote:
Originally Posted by Amyjay View Post
So much to respond to in this thread!
Peaches, when I was first diagnosed it freaked me out even though I had suspected it for a while too. Having someone tell me "You have DID" made it all too real in a frightening way for me. I keep wanting to say "Uhhhh,.... really??"
I think that was partly because I had the idea that DID was this thing that was portrayed in the movies and books and I am -nothing- like that. I would have called myself a high-functioning social avoidant neurotic if anything. But what you see here with me {does a twirl} is what DID looks like apparently. This is it. Well one of the ways DID manifests itself in apparently normal people anyway. It doesn't come with bells and whistles on, just years and years of hidden-from-the-world pain.

Ruh roh, yesterday the alter who fronted at therapy doesn't believe she has DID. it was the first time she had been to t for a time long enough to sustain back and forth dialogue and T did her best to help her connect to us others. She just can't. She needs to live her life, to work, to play, to live, to be normal. She told t if everyone else would just go away she would be fine because that is the truth I suppose. You say you "suddenly" believe this is the wrong diagnosis. Does that mean that up until very recently you believed it was right? I wonder if you know what the difference is between now and then that made you change your mind to believe it is now wrong.
Because you know I hate to point it out to you but believing it was right and now believing it is wrong is kind of.... well case in point, really.
Thanks, amyjay. I can't actually understand how I believed it for so long. My therapist is so convinced that I have DID that I've been worried she has mental problems of her own. I do take your last point...it's just hard to accept. I'm not to thrilled with the idea that my therapist is a nutcase either, so it's been hard to reconcile.
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Old 01-11-2018, 10:07 PM   #8
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Default Re: T Told Me I Have DID (LONG)

Quote:
Originally Posted by ruh roh View Post
Thanks, amyjay. I can't actually understand how I believed it for so long. My therapist is so convinced that I have DID that I've been worried she has mental problems of her own. I do take your last point...it's just hard to accept. I'm not to thrilled with the idea that my therapist is a nutcase either, so it's been hard to reconcile.
I don't think there is anything wrong with suspending all belief until if and when evidence to the contrary presents itself.
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Old 01-12-2018, 09:07 AM   #9
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Default Re: T Told Me I Have DID (LONG)

Peaches.... Im having one of those weeks where my perceptions are a bit off so I went back and reread some of your past posts..... some of them have statements that your treatment providers have mentioned or diagnosed you with DID in the past and have made comments according to your posts like.. you are half way between normal and DID and other references to DID by your treatment providers....

reason I point this out is you put the "shocked" emoji on your title.... it may seem shocking to be told this but you might want to take a moment and breath and reread your past posts. they may help you get past the shocked- ness of this. reading my past posts sometimes helps to ground me in the reality that what my treatment providers are saying is actually nothing new to me and to breath.

in your thread you asked ...
"Do you think my t should add DID to my official diagnosis for my insurance company? Or do you think it would be disputed or require a bunch of extra evaluation, etc. for them to approve continued sessions? Do those of you with a DID diagnosis have it officially written down in their records for insurance purposes or not?"

my answers I cant tell you whether you should or should not add DID to your official diagnosis list with the insurance. only you know what your insurance plan is and how they do things and what is best for you. what I can tell you is that......my own...... insurance company did have DID listed. you see the way my insurance company works is they dont pay per mental disorder, they pay per treatments I was / am given. example they dont pay out this much for my having PTSD, or that much for having bipolar and that much for my having MS. they pay for my treatments ....therapy time, medications, diagnostic evaluations when I need them, labs and scans... the lists and codes of mental and physical health problems on the forms just tells them things like why I need the meds, why I need the labs, why I need the therapy, ... they have never denied payment to my treatment providers for having this or that mental disorder, but they have denied treatments when the paperwork wasnt worded correctly.. my therapist said I was having flashbacks but listed my bipolar coding on the paperwork, the coding for PTSD symptoms is different than the coding for bipolar so the extra therapy sessions got denied. once this paperwork problem was taken care of where the problem matched the coding the sessions were approved.

my suggestion would be to look in your insurance member booklet and see what it says about what your insurance plan is and how it works. then you will have the information you need to decide what is best for you and your insurance. if you cant find your insurance member booklet contact the insurance company. they may send you another one.
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Old 01-12-2018, 07:50 PM   #10
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Default Re: T Told Me I Have DID (LONG)

Peaches, I am also a high functioning person with DID. It happens. And I also have parts that do not believe the diagnosis is correct. Writing that sounds funny!

For my insurance it doesn't matter what diagnosis is on the record. I see no reason to add the diagnosis unless it will help you get treatment. Insurance companies do have their data hacked once in a while, so why not keep it private?

My family of origin does not know my diagnosis. I have told very few people-only those who in my opinion need to know. Husband, pdoc, various Ts, best friend, GP. I don't really want to have to defend the diagnosis, nor do I want to upset them.

It is a hard diagnosis to hear. Like you, I tend to avoid people because I am embarrassed by my switching and dissociation.

It sounds like the book is helpful regardless of diagnosis; I'd keep on working on that. And perhaps at some point seek out a T who has experience with DID. The border between many disorders is fuzzy and there is a lot of overlap. A different provider might think differently.
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