Interested to hear others' experiences (especially those with dissociative disorders)

[beaneeboo]

I'm receiving therapy from a clinic which specialises in dissociative disorders... I've always struggled with accepting the diagnosis (denial is strong) and I've been told its all part and parcel of being so dissociative, having strong amnesia etc.

Communication with my parts is difficult because they aren't as defined as maybe some other people's parts are... I don't have full blown separate personalities operating, but I have a lot of parts playing various roles, often in ways I'm not aware of, or if I am, for reasons I don't yet understand... (amnesia also strong)..so I don't have a good handle on managing communication with them... and half the time I feel like a fraud for even trying to communicate, since not all of me believes I have the disorder... yep it's a head f*ck!

However, I've been checking in and asking parts how they feel about things for the past few weeks , with various responses....

yesterday, something happened in therapy which left me a bit bewildered... I'd had a massive push pack about going tu session due to memories surfacing during the week, which I'd written in my diary which is shared on line with T... I hadn't checked I'd had permission to hand these memories over and not all parts were happy I'd shared it... after a long session exploring why these parts were worried, T asked me/ them what it was they wanted / needed in session before it finished... whether they needed me / T to know anything, what would make them feel better... at which point it very suddenly and very clearly came to me (repetitive thought voice) that they told me 'Just don't hurt the baby')... this was out of the blue and seemingly unrelated to anything I was thinking of, or that we'd been talking about... yet, although it didn't make sense in that exact moment, I know there was a truth held in those words... that on some level, without having proof, I know things happened to me when I was very very young, which were traumatic.. without knowing what these were...(having my son gave me the opportunity to see that surface through my multiple difficulties I experienced when he was very young)... T then spoke to them to reassure them that a) he wasn't in the room (he's online), and b) he would never hurt any part of me

So what's my question... ? Has a similar type of surfacing come up for other people (one seemingly unrelated to anything but which you know makes sense)... and for those with a dissociative disorder.. how do you get over the unreality of having a part of your personality speak/communicate with you..??. this is just such a lot to digest and I feel very alone with it...I can't talk about this with my friends... it's spinning me out

 

[OM_™]

how do you get over the unreality of having a part of your personality speak/communicate with you..?

You don't 'get over' you integrate as much as you can.

 

[beaneeboo]

I'm talking about the feeling of unreality rather than integrating... I think to try to integrate (which is complex) I need to first not be feeling he unrealness I experience about it... but I don't know how to do that... if that makes sense

 

[Ecdysis]

Hi @beaneeboo Nice to see you and to hear that thearpy is going well!

I wonder whether differentiating between dissociative disorder generally and dissociative identity disorder would be helpful?

Not all dissociation has to do with having parts, so I wonder whether that will confuse the issue?

 

[beaneeboo]

Hi @beaneeboo Nice to see you and to hear that thearpy is going well!

I wonder whether differentiating between dissociative disorder generally and dissociative identity disorder would be helpful?

Not all dissociation has to do with having parts, so I wonder whether that will confuse the issue?

Hi @Ecdysis! Good to hear from you... how are you doing?

You make a really good point here... not all dissociative conditions have parts... but I guess I'm discovering that i do, so I guess it applies to me... although I don't have DID, I have OSDD... I think that's what I meant by saying dissociative disorders... either OSDD or DID...

 

[Renly]

Has a similar type of surfacing come up for other people (one seemingly unrelated to anything but which you know makes sense)...

Yes, definitely. Associated memories run together in the same neural networks in our brains. When amnesia and parts (regardless how dissociated they are) are involved, confusing things surface that don’t make sense to “me” at the time, but they may make sense to another part of us. Give it time and gentle exploration. Tons of things made no sense to me for a long time, but the more I got to know my parts and their history, the more those confusing things began to make sense and fall into place. I have pretty good communication with most parts of me, but some parts still hold secrets. I am still confused about a number of similar things. I’ve come to trust that when I am ready and the parts are ready, the information will come. It cannot be rushed.

how do you get over the unreality of having a part of your personality speak/communicate with you..??.

This is still a struggle for me. But it has lessened over time. It’s something that cannot be forced, rushed, or “gotten over.” It’s with gentle compassion of all parts and knowing that the disbelief is a part of the gig. Honestly, what’s helped for me is having people in my life who actually know the parts (mostly my husband and T). They know I’m not making it up (because they know and have relationships with the parts) and that has helped me in my deeper denial phases. Also learning about HOW the parts worked to save my life and learning about their specific roles and stories has aided in acceptance. As the story of my life becomes more “mine” and less “that didn’t happen to me,” the easier it’s been to accept the parts are real and I wouldn’t have survived without them.

this is just such a lot to digest and I feel very alone with it...I can't talk about this with my friends... it's spinning me out

Yep. My life tanked 5 years ago and I’ve been actively immersed in the healing process for 3+ years now. But most of that time has been very lonely and terrifying. It’s taken a lot to slowly begin building my support network, but it’s made a major difference in my life. This place was an impactful first step for me. We aren’t supposed to be alone with all this stuff. I’ve been fortunate that my friends and family who I have disclosed to so far have been accepting, validating, and supportive. It was a scary risk, but it paid off.

Sending lots of support your way as you navigate these difficult and lonesome struggles. Just a reminder that you aren’t alone, even if it feels that way.

 

[beaneeboo]

Hi @Renly good to hear from you.... thank you for dropping by...

Tons of things made no sense to me for a long time, but the more I got to know my parts and their history, the more those confusing things began to make sense and fall into place.

I would be interested in your process of getting to know your parts... i struggle a bit with this because there is such poor definition of parts, certainly in terms of identity and ages etc..i can get a rough idea but it's not exact... or sometimes there's none at all... everything feels very murky ...i think i can more label parts according to their roles and function... like when 3 turns up when there's an immediate threat e.g in conversation when there's a fear i may expose information i shouldn't...

I have pretty good communication with most parts of me, but some parts still hold secrets. I am still confused about a number of similar things. I’ve come to trust that when I am ready and the parts are ready, the information will come. It cannot be rushed.

This sounds healthy... I'm struggling with parts of me wanting the info out now so it can be dealt with and we can get on with life... but that's not how it can ever work...

This is still a struggle for me. But it has lessened over time. It’s something that cannot be forced, rushed, or “gotten over.”

Ok

It’s with gentle compassion of all parts

Really difficult. I'm not sure how to do this. When I've asked T his take on it is I'm not ready because of my protector parts having such control over me using fear and threat. He says sometimes compassion can make that dynamic worse... which I find hard as I would like to start trying to develop compassion for myself... but I don't want a backlash, I've been through hell because of these critical parts the last few months

and knowing that the disbelief is a part of the gig. Honestly, what’s helped for me is having people in my life who actually know the parts (mostly my husband and T). They know I’m not making it up (because they know and have relationships with the parts) and that has helped me in my deeper denial phases.

Well done you... this sounds like a massive step... proud of you for getting this far... I can see how the feedback would be helpful for sure..

My partner died unexpectedly 4 months ago. Yes I know right. No words for that. Just no words

Also learning about HOW the parts worked to save my life and learning about their specific roles and stories has aided in acceptance. As the story of my life becomes more “mine” and less “that didn’t happen to me,” the easier it’s been to accept the parts are real and I wouldn’t have survived without them.

Yep. My life tanked 5 years ago and I’ve been actively immersed in the healing process for 3+ years now. But most of that time has been very lonely and terrifying. It’s taken a lot to slowly begin building my support network, but it’s made a major difference in my life. This place was an impactful first step for me. We aren’t supposed to be alone with all this stuff. I’ve been fortunate that my friends and family who I have disclosed to so far have been accepting, validating, and supportive. It was a scary risk, but it paid off.

I'm so glad it did. And I'm so glad I can read this from someone else who has similar experiences to see it is possible. The furthest I got was last week actually, trying to tell my friend about the osdd diagnosis. I couldn't explain it very well and wish I had something which explained it well to give it to him. I guess that's one step forward. Other than that none knows. And it's theisolation which is killing me.

Sending lots of support your way as you navigate these difficult and lonesome struggles. Just a reminder that you aren’t alone, even if it feels that way.

Thank you @Renly ... you too...

 

[Freida]

I'm talking about the feeling of unreality ra

omg this. It has been super hard for t to convince me that while we all have parts one of mine is more...alive even though I've been aware of her for a long time. But the more she takes over my thoughts or voice the weirder it gets and it messes me up every.single.time.

I had a long road to walk with her because even when I wasn't sure she was real I hated her with a blinding passion and just wanted her dead. So it's taken t several years to get me to acknowledge what she went thru both with me and without me and to stop blaming her for what happened. Compassion for her is coming along, but it's slow.
EMDR was the best thing ever because it got me into a mindest that was a little more calm, so I could look at her and her experiences from a better place without just wanting to kill her. Don't get me wrong - it totally sucked, but it's been worth it.

 

[beaneeboo]

omg this. It has been super hard for t to convince me that while we all have parts one of mine is more...alive even though I've been aware of her for a long time. But the more she takes over my thoughts or voice the weirder it gets and it messes me up every.single.time.

I had a long road to walk with her because even when I wasn't sure she was real I hated her with a blinding passion and just wanted her dead. So it's taken t several years to get me to acknowledge what she went thru both with me and without me and to stop blaming her for what happened. Compassion for her is coming along, but it's slow.
EMDR was the best thing ever because it got me into a mindest that was a little more calm, so I could look at her and her experiences from a better place without just wanting to kill her. Don't get me wrong - it totally sucked, but it's been worth it.

Thanks @Freida ... it's good to hear about others' experiences ... I'm glad you got what I'm saying (even writing it here feels weird)...

So can I ask are you also co-consciuos with some of your parts? Like at times you have an awareness of what it's going on for them simultaneously? Or has it always been in hindsight?

EMDR sounds good... I'm not sure I can do that as I don't think my T (psychologist) does it. He's online too... but I see what you're saying about being in a calmer place...I think I'm supposed to be in the 'stabilisation' phase atm but every now and then there's an eruption of memory of some sort and all the old processes kick in which send me back to what feels like square 1 again (essentially 3 parts who like to give an almighty backlash if i try to share anything with T)... So I can see how calmness is a pre requisite for being curious (classic therapy talk)... I just don't know how to calm the f*ck down when everyone decides to kick off.. guess it's a work in progress

 

[Renly]

I would be interested in your process of getting to know your parts... i struggle a bit with this because there is such poor definition of parts, certainly in terms of identity and ages etc..i can get a rough idea but it's not exact... or sometimes there's none at all... everything feels very murky ...i think i can more label parts according to their roles and function... like when 3 turns up when there's an immediate threat e.g in conversation when there's a fear i may expose information i shouldn't...

I have journaled almost daily for the last 3 years and have made a real solid effort to make regular space for the parts. I wasn’t able to work (minus helping my husband run his business) and left my career field for a total of 3 years. Part of that was because I was completely debilitated and part of it was because it wasn’t ethically responsible for me to continue my work. It was a majorly difficult time since a lot of my self-worth was tied into my work, but it gave me time to hone in and really put 100% into getting to know all the me’s and healing. I realize the process may need to have been different if I had to keep working and if I had children to care for, so keep that in mind.

Although many of my parts are very “typical DID”…not all of my parts are super well defined and not all my parts front. I don’t think that bit really matters. What is important is just noticing and making space for the parts. It takes a lot of time and effort. Once it is safe/time, they may be able to tell you why they came/why you needed them. It’s been that way for very well defined parts of me and even fragments. I took a LOT of notes to map out all my triggers and figure out what was causing switching. I invited my parts to talk to me or share info in any way they were able. It was scary and exhausting and messy and different strategies were needed for different parts. But it’s a process of working out what works for yous. It takes as long as it takes.

There are 27 of us we are currently aware of. It’s a lot to sort through. We have had to make space for the parts AND the emotions. It’s been the hardest thing I’ve ever had to do.

This sounds healthy... I'm struggling with parts of me wanting the info out now so it can be dealt with and we can get on with life... but that's not how it can ever work...

We also have parts that operate this way. Some desperately want to unburden while other parts continue to block them. It’s like peeling back the layers a little at a time. It’s a complicated dance.

Really difficult. I'm not sure how to do this. When I've asked T his take on it is I'm not ready because of my protector parts having such control over me using fear and threat. He says sometimes compassion can make that dynamic worse... which I find hard as I would like to start trying to develop compassion for myself... but I don't want a backlash, I've been through hell because of these critical parts the last few months

Yes, it’s been one of the hardest parts of the journey. It takes a lot of time and patience. We have worked on thanking the protectors for their valuable insight/strategies that have worked well during trauma to keep us safe, but work to remind them things are different now and new strategies are needed. It can trigger them. It’s messy.

My partner died unexpectedly 4 months ago. Yes I know right. No words for that. Just no words

I’m so sorry. This is heartbreaking. That all by itself is so major.

Finding support wherever we can is something we have worked towards. T is #1, but she’s not available whenever we need her so we knew we had to keep expanding. We do DID group therapy, attended the Annual DID Conference (Healing Together) in search of real in-person support, and have slowly branched out to people close to us in our life. We realize we are very fortunate to have a loving husband who supports and loves all parts of us. The main point here is that you continue to take those risks very thoughtfully and carefully when you are ready and with safe people. Disclosure is terrifying and it can end up being a disaster. But for us, the risk has been worth the reward. Don’t rush it. Lean into the safe spaces you have in the meantime (like here)

The furthest I got was last week actually, trying to tell my friend about the osdd diagnosis. I couldn't explain it very well and wish I had something which explained it well to give it to him.

There are some good resources out there. It’s a little harder to find specifically for OSDD. Have you tried looking up the “Dissociation Spectrum”? That visual has helped me explain my diagnosis with others in a more understandable way.

 

[Freida]

So can I ask are you also co-consciuos with some of your parts? Like at times you have an awareness of what it's going on for them simultaneously? Or has it always been in hindsight?

When T told me I had people in my head I laughed at the nonsense. Once she got me to "see" them it was ....unreal. So we started with the parts that made me feel better -- like the warrior part who fought for her life. I could accept that kind of part because she wasn't a winey ass. It took years before I recognized the screamer part, and more years before I could start accepting "her" version of my life.

I fought the concept hard at the beginning, then I read The Body Keeps the Score, which became my bible. He does an incredible job of explaining parts and how they work and where they came from and what not, so I didn't feel as crazy when I thought about them. It was a hard read -- threw it across the room many times.

But it made sense, so ......

It was all in hindsight till about 2 years ago -- now I can kinda get screamers view in real time so that's making the process go a bit faster

 

[beaneeboo]

Thank you so much for sharing all you have @Renly ... i feel less alone in my experience when i hear of others' experiences... though, as always, I'm sorry any of us are in this situation.

I have journaled almost daily for the last 3 years and have made a real solid effort to make regular space for the parts.

Did you feel you had defined parts at the beginning of this journey?

I wasn’t able to work (minus helping my husband run his business) and left my career field for a total of 3 years. Part of that was because I was completely debilitated and part of it was because it wasn’t ethically responsible for me to continue my work.

This is very similar to my situation. I'm having tu decide whether to give my self employed position up and do something else now as I've not coped with it for a couple of years now.

It was a majorly difficult time since a lot of my self-worth was tied into my work,

yep i get this

but it gave me time to hone in and really put 100% into getting to know all the me’s

Was this mainly through journalling?

and healing. I realize the process may need to have been different if I had to keep working and if I had children to care for, so keep that in mind.

my son has been my saviour - not in the sense that I'm making him my emotional crutch, but in the sense i have to get up in the morning and do what i need to do as a mum to get him on in life. And this has been my biggest gift in my darkest hour. But yes, despite not really working, i seem to not find the time to do things like journalling, so will have tu make a concerted effort. I think my amnesia is s big problem with regards to moving myself forward in a structured way. I set out to do things and then they don't happen because I lose sight of the fact I was supposed to do them...T thinks it's me getting blocked by parts potentially

Although many of my parts are very “typical DID”…not all of my parts are super well defined and not all my parts front. I don’t think that bit really matters.

ok

What is important is just noticing and making space for the parts. It takes a lot of time and effort.

i think this is what's missing for me. And I'm scared to do it.

Once it is safe/time, they may be able to tell you why they came/why you needed them. It’s been that way for very well defined parts of me and even fragments. I took a LOT of notes to map out all my triggers and figure out what was causing switching.

wow well done, that can't have been easy. I'm realising I have no idea what my triggers are.

I invited my parts to talk to me or share info in any way they were able. It was scary and exhausting and messy and different strategies were needed for different parts. But it’s a process of working out what works for yous. It takes as long as it takes.

I'm sorry to keep asking more info. What kind of strategies? I don't think I'm at this stage in the therapeutic process, other than doing a bit of mirror work, which seems to help. But I'm still finding it very strange the idea of 'communication' with parts....I don't know why it's such a blocker

There are 27 of us we are currently aware of. It’s a lot to sort through. We have had to make space for the parts AND the emotions. It’s been the hardest thing I’ve ever had to do.

I think you've done amazingly. I know only snippets of your journey, and it's been so hard. But well done. And keep going.

We also have parts that operate this way. Some desperately want to unburden while other parts continue to block them. It’s like peeling back the layers a little at a time. It’s a complicated dance.


Yes, it’s been one of the hardest parts of the journey. It takes a lot of time and patience. We have worked on thanking the protectors for their valuable insight/strategies that have worked well during trauma to keep us safe, but work to remind them things are different now and new strategies are needed. It can trigger them. It’s messy.

This sounds exactly like what my therapist says. I'm still finding it hard to genuinely connect to the idea I can be thankful for parts who seem intent on destroying me. It's really hard. But I do get the logic.

I’m so sorry. This is heartbreaking. That all by itself is so mamajor.

I don't know how I'm holding it together. Maybe one up side of dissociation on occasion.

Finding support wherever we can is something we have worked towards. T is #1, but she’s not available whenever we need her so we knew we had to keep expanding. We do DID group therapy, attended the Annual DID Conference (Healing Together) in search of real in-person support, and have slowly branched out to people close to us in our life. We realize we are very fortunate to have a loving husband who supports and loves all parts of us. The main point here is that you continue to take those risks very thoughtfully and carefully when you are ready and with safe people. Disclosure is terrifying and it can end up being a disaster. But for us, the risk has been worth the reward. Don’t rush it. Lean into the safe spaces you have in the meantime (like here).

This is good advice. I have no idea how to do it but I know it's something I have to do. I've told 2 friends in the last week about the dissociation and past abuse. So that's a step forward.

There are some good resources out there. It’s a little harder to find specifically for OSDD. Have you tried looking up the “Dissociation Spectrum”? That visual has helped me explain my diagnosis with others in a more understandable way.

no i haven't heard of this. I don't really know if any resources. I'm going to give this a look.

Thank you @Renly