Lived Experience Forum

[destructive]

Hi forum friends

So I've commented elsewhere I have been diagnosised with Dissociative Identity Disorder. It's super confusing and I'm struggling to make sense of it and if it even really fits for me. I do agree I experience dissociation but I'm not sure about that kind. There are days/times where I feel there but not there, my body feels heavy and almost paralysed. I am very forgetful and don't remember a lot of my younger years but them sometimes I remember something so very clearly. I don't recall trauma although I know there are some things I would change about my parents I wouldn't call it abuse. I freeze in therapy. My body goes tense amd I feel stuck in my head. I can see although sometimes it's hazy, but can't move or talk. I know I have odd reactions to some things that don't make sense. 

I wondered if others who experience any kinds of dissociation might feel ok to connect and share here? Partly because I'm trying to figure out how everything fits and make some sense, and also to offer some mutual support. 

Des

[Millieme]

yes, struggling more with dissociatin lately. have times where everything around me has just gone too far away and i can 'hear' people but they're talking from far away and i cant make out what anyone is saying. i think this only happens when im fighting to stay present when things are really really hard, like when im seeing psychologist etc
Other times there are hours i just lose usually when things have been stressful at work a lot or weekends on my own. sometimes i feel like there is an autopilot function i don't know how to turn on/off. like ican see what im doing but its not me im just watching. its too much a lot of the time to cope with. i panic with any physical touch if unexpected worse. noone seems to be able to help with this i practice all the breathing and grounding but can only do it when i am 'back' or if i have a minute to recognise that things are going but often its just 'snap' and too late. psych is heavily pressing working through trauma stuff and i think everything else has gotten worse. prbbly shared too much sorry.

[Former-Member]

Hi @destructive, @Millieme and anybody who passes through. We have DID too but we are at the other end of the scale as we have distinct separate identies that create a working system. For example I'm Harmony and I front when our main/born is having trouble keeping it together but is also around her son as he is only 8 and we don't want him to be affected by us. I am the only one who can come out and not be noticed. 

We have a range of other identities too from our youngest little who is 2 to our oldest which we don't know the age of but she is holly our demon and she is currently locked up which is good it means even though our main is struggling she is not sui***al right now because holly only has the power to break free when main doesn't want to be here. 

Our main also does experience what you do and she has also experienced out of body stuff too like she was watching the body rather than in the body it has happened twice or at least our community diary says that.

We try to do a lot of system/ self care stuff from hygiene care to calming breathing to small activities that bring us joy.

Not sure if any of this helps you though but we are happy to talk we also have a thread called babydragons den which lots of us talk on 

[destructive]

Wow @Millieme  that sounds a lot like what I experience. Do you have a formal diagnosis? How do you make sense of it all. Obviously you have a trauma history. Do you find it makes sense to you?

@Former-Member  thank you for sharing your experience. What you describe is what I kind of imagine as being DID. I do have voices some have names but I don't feel like I become them. So that's what is so confusing. I don't think I've changed personality in fro t of my therapist to make her think that so it's confusing. When did you get diagnosed? Did you believe it at first. Have you always knows so much about your alters/parts/personalities (sorry not up with the terms? Or did you ever experience life like MillieMe and I?

[Millieme]

@destructive my previous therapist said I have dissociative identity disorder. my new psychologist just keeps saying i have trauma. a lot of severe trauma. i want to ask her for a more definitive diagnosis but im always too scared to ask/speak mostly.
im not good at making sense of it, sometimes i want some kind of answer, and sometimes i just want it all to go away so much that i just want to disappear because it doesn't really matter 'what' is wrong just that i don't feel like theres anyway to fix it all. I think others can 'heal' but i don't feel like i can. my trauma history feels so messy, theres so many different parts to everything. im not sure of what is what or when just that it all kind of gets so mixed up when i try to make sense of things that happened or just try to remember it in an adult way i just get... too many things crushing me like feelings of what happened, physically feeling things and so many flashes of memory some like photo's of bad things and others movies and faces jump out at me. i don't think i can explain it very well. im not sure i can make sense of why i still cant pull myself together (literally i guess) and just live/cope. how do you make sense of it?

[destructive]

I don't/can't make sense of it either @Millieme I'm confused as hell. I have reactions to things like you, like someone with trauma, but with no memory of trauma. I do have something that has been coming in my mind like you describe, bits and pieces, but I don't know what's a thought and what's a memory because my head has been so full of voices for such a long time.

I think you explain it so well but I also know the feeling of feeling so incoherent. And feeling to ashamed to express your needs/wants and ask questions. I desperately want to ask what exactly has lead to my Ts dx, have I behaved differently with her and not known, but I'm to ashamed to even say hello or goodbye most days. I instantly feel shame walking in her door. Not because of her, she's been nothing but compassionate. 

Do you connect well with your T? I can find it can be so hard to know who is a good one and who isn't because it's not always some big things. Sometimes just their knowledge but if we don't even know ourselves how are we supposed to know if they have it. It can feel hopeless.

@Millieme  you don't have to answer anything g you don't want but do you feel like you become other people/personalities/alters like baby dragon? Do you know how you last T came to DID dx?

[Millieme]

when im in that auto pilot where im watching myself it doesn't look like me. i don't know. i have a bad voice in myhead that is not so good but its not something that is what i have read described as being. i feel like i don't fit any 'boxes' sometimes in terms of labels. 

my previous t felt that there was a lot of symptoms and could see different parts of me when with her. she asked me to do a lot questionnaires/tests. my new psych has used the word fragmented a lot. but i cant remember the whole sentences or contexts of when she has used that word but i can hear it being said. my memory is terrible like that, some word or thing will stay stuck on its own but with not much else. i think that's partly why therapy is slow/hard/impossible a lot of the time. i try to write notes after so i can look back but often im struggling so much after appts and have children to try and be ok for that i cant and by the time i get time its already too broken. i often dont know if i can trust what i think has happened or been said because i mix things up or i change things to be different somehow in my head, not on purpose and knowing what is really real is hard. 

what about you?

[Former-Member]

@destructive and @Millieme 

To be honest I wasn't diagnosed till my early 20s but have experienced the symptoms since mid teens being about 15 when i first became aware of at least 2 of my alters but it was probably earlier as when I started school I use to go on about a friend named Kelly being in my first grade class but my class photo doesn't have a Kelly and one of my really young littles is named Kelly so I really don't know what to make of that. 

I get the foggy mist experience too though and the being there but not in control and voices .... My voices are never quiet.

I've also been diagnosed with anxiety,  depression, social anxiety, panic disorder and CPTSD. 

Along with that I have severe asthma and a few other physical health issues.

But despite all this I get knocked back with centrelink and NDIS help as of the latest I was told that they can't help me because my son doesn't show signs of neglect or abuse so my health can't be affecting me that much.  

[Millieme]

i have some of those diagnoses also @Former-Member but some are older dx and i really don't know what's what anymore. mostly just feel broken. I've also struggled since teens and definitely early 20s things were off with me.
the mental health side of ndis is so wrong. there's also no support or consistency with anything outside of ndis. i saw someone write on sane somewhere about there being no help unless you are beyond crisis. that's been the case with me. even though i have wonderful, kind psych at the moment i don't trust that it will last. after hospitalisation i had 8 different workers over as many months (they moved, left, i was swapped to different level 'teams' etc or there was no one available so was on a 'locum list' for fill ins. i know i wont be able to afford anything when this ends either. my kids struggle with a lot of things including because i went into hospital after several attempts a few years ago now... but other things outside my control as well. and there's still no help/hope for me getting any extra help either from ndis or community outreach support. its not just me that's broken i guess but the whole world/system that i don't belong in.

[destructive]

@Former-Member @Millieme  I have had other dx over the years too but same as you @Millieme @I don't know which ones are right. Often o don't get told either and find out through GP or seeing something written. I think they get worried it'll effect me to know or something. The ones are know are social anxiety, schizophrenia, and PTSD. 
I struggle to remember therapy too and sometimes just remember, or think I remember, one snippet. Especially if it's a day I have frozen up a lot. o also have a child and it's so hard . I desperately want to not mess him up but I don't know if I can

@Former-Member @How do you deal with the voices? It can be so unrelenting! And I have one in particular that can be vicious amd therapist is really focusing on that one which I feel makes it worse. Therapist keeps asking her purpose but I don't know.