Kayla's healing journey

Hi everyone,

I'm Kayla and I'm new on this forum

A few months ago I discovered I might be DID and it has been a wild ride since then. I'm currently trying to find the right kind of treatment and I like the idea of having a thread to document the journey and hopefully help someone else with my experiences.

Thanks for having me!

hello Kayla & welcome to the forum!

tl;dr: it ended up being a list of symptoms I experience, comments are welcome and appreciated!

A collection of thoughts and other things on my mind:

So much denial and coming up with 'reasons' why I can't have DID: It wasn't bad enough. For example: 'X did not happen to me so that's why I can't have DID'. Whatever X is, can change from day to day. There is always something that I did not experience that I think is a criteria for having DID even though I know it isn't. (I am diagnosed with OSDD, DP/DR)

What does switching feel like? Sometimes I experience waking up in the middle of doing something, suddenly becoming aware of my own existence, even thinking :'Hey, I'm back'. But I haven't been anywhere? It feels weird.

Other times I can tell in hindsight that things that have happened earlier in the day were not things that I did. Even though I remember doing them, it doesn't feel like it was me. I do not experience black outs or other kinds of time loss. I can always remember what I did, however sometimes the content of what happened can be blurry. For example: Going to therapy and knowing I went there but having a hard time remembering what we talked about, even if it was an hour ago. Or sending an email and knowing that I sent the email but the content of what I wrote is blurry.

A period in my life is about to end and I don't know what happens next and it scares me. The way I used to live, assuming I was a singlet, doesn't work anymore and it feels like I have to reinvent my life. There is a lot of uncertainty going on... what kind of work am I going to do? Can I still afford to live in my apartment? It interferes with therapy because with all this uncertainty I can afford destabilizing too much so I'm holding. I have to remain functioning. There is nothing I can fall back to but me.

I don't have a set of strangers living in this body with me, I have a set of different me's that can switch with each other. Sometimes I end up in a situation where the wrong 'me' is present. We all have different names (internally), looks, different views on the world, ages,our experiences etc.. but in the end they're all me and not me at all at the same time.

I can be doing my thing all day, nothing going on, everything's fine and then catch a glimpse of myself in the mirror and be totally out of it. Feeling so different on the inside than what this body looks on the outside. The inside self/selves and the outside self are so different. Looks, voice, mannerism..

Am I hearing voices? Yes and no. I can argue with my thoughts and have conversations with myself in my head. Don't we all? maybe... Where's the line? Does the internal talking that other (non-systems) experience interfere with their functioning in daily life? Can they control it?

I know things that I don't know how I know them. The knowledge just appears sometimes as if someone put it there for me. The other way around is also true: Something that I want to say... can just disappear mid sentence and only the knowledge of that it existed before is left. I knew 'it' was there without remembering what 'it' is. Someone took it. But maybe I just have a bad attention span? No I don't it's too specific for that.

If I want to know something I can think about the question and get an answer back that I know doesn't come from me. Not all the times, but enough times that it stands out.

When I walk or talk.. sometimes I forget how to do that? It feels like driving this body without a license, trying to figure it out as we go. It is very uncomfortable and disruptive of functioning. The constant tug of war going on in this body while walking, thinking, talking... you can't go left and right at the same time... if you do you'll end up stuck. I end up stuck a lot.

People can seem strangers and friends at the same time. One 'me' knows who this person is and has a relationship with them, another 'me' knows who this person is but doesn't have a relationship with them -> they know the other person doesn't know them. It's uncomfortable and stressful. When this happens it feels like I am about to be called out on not being the me they think they're talking to.

I can feel like I am multiple ages at the same time that clash with each other. I'd forget how old I am and have to calculate when someone asks. it makes me feel stupid for forgetting how old I am.

Conclusion: I feel like an impostor in my own life.

Hello, and welcome!

Kayalune wrote:So much denial and coming up with 'reasons' why I can't have DID: It wasn't bad enough.

Any trauma is "bad enough". The "bad enough" is about how your brain reacted to the trauma, NOT about the action that was done to you. Some people can developp DID from having attachment disorders.

Kayalune wrote:What does switching feel like?

Like a metamorphosis of the mind, or like somebody else is taking control of what you do/say. At least that's how it is for me.

Kayalune wrote:Sometimes I experience waking up in the middle of doing something, suddenly becoming aware of my own existence, even thinking :'Hey, I'm back'. But I haven't been anywhere? It feels weird.

I associate these feelings with "waking up from depersonalization / derealization" as well as "waking up from a trance-like state".

Kayalune wrote:Other times I can tell in hindsight that things that have happened earlier in the day were not things that I did. Even though I remember doing them, it doesn't feel like it was me.

This is the "perturbation of the sense of agency" (agency = I am the one doing the thing) described in dissociative disorders.

Kayalune wrote:I do not experience black outs or other kinds of time loss.

Blackouts are very rare. Time loss feels for me more like I have a very bad memory, or the chronological order of the memories is messed up, or that I "zone out" a lot.

Kayalune wrote:I can always remember what I did, however sometimes the content of what happened can be blurry. For example: Going to therapy and knowing I went there but having a hard time remembering what we talked about, even if it was an hour ago. Or sending an email and knowing that I sent the email but the content of what I wrote is blurry.

This is a form of dissociative amnesia.

Kayalune wrote:A period in my life is about to end and I don't know what happens next and it scares me.

Welcome to the anxiety train. Have a seat. We have cookies and lemonade.

Kayalune wrote:The way I used to live, assuming I was a singlet, doesn't work anymore and it feels like I have to reinvent my life.

I know how scary it can sound. But it's better to know one is dissociative than to keep being in denial. Once you know, you can go towards ressource books such as "Coping with trauma related dissociation" as well as seeking trauma therapy. And things get better. It's scary when you open your eyes and realize the mess you are in, but it's a needed step before cleaning said mess.

Kayalune wrote:There is a lot of uncertainty going on... what kind of work am I going to do? Can I still afford to live in my apartment? It interferes with therapy because with all this uncertainty I can afford destabilizing too much so I'm holding. I have to remain functioning. There is nothing I can fall back to but me.

I know the feeling. I sincerely hope that you will have access to the material help and support that you need. Keep in mind that it can only get better from here. And I promise it will get better.

Kayalune wrote:I don't have a set of strangers living in this body with me, I have a set of different me's that can switch with each other.

That's an accurate depiction of dissociative disorder. The different "me" can feel like strangers sometimes, but when the dissociation walls lower, they feel more and more like "other me".

Kayalune wrote:Sometimes I end up in a situation where the wrong 'me' is present. We all have different names (internally), looks, different views on the world, ages,our experiences etc.. but in the end they're all me and not me at all at the same time.

That's what dissociation is about. The brain gives different identities to the different dissociated parts because it's easier to manage them all this way. But they are still all "you". Different parts of the same whole.

Kayalune wrote:I can be doing my thing all day, nothing going on, everything's fine and then catch a glimpse of myself in the mirror and be totally out of it. Feeling so different on the inside than what this body looks on the outside. The inside self/selves and the outside self are so different. Looks, voice, mannerism...

Sounds like dissociation to me.

Kayalune wrote:Am I hearing voices? Yes and no. I can argue with my thoughts and have conversations with myself in my head. Don't we all? maybe... Where's the line? Does the internal talking that other (non-systems) experience interfere with their functioning in daily life? Can they control it?

Discussing within the same "me" feels different than discussing between different "me". Also when all the "me" are connected / integrated, there is less head noise. Or at least that's how it's evolving for me with the integration process.

Kayalune wrote:I know things that I don't know how I know them. The knowledge just appears sometimes as if someone put it there for me. The other way around is also true: Something that I want to say... can just disappear mid sentence and only the knowledge of that it existed before is left. I knew 'it' was there without remembering what 'it' is. Someone took it. But maybe I just have a bad attention span? No I don't it's too specific for that.

Not consistent with attention span issues, from what I know about it. I have ADHD as well as dissociation disorders, and ADHD issues feel different from dissociative issues. Autistic sensory overload can also cause "zoning out" and it also feels different. At least for me. Maybe for other persons it's too tangled to be able to differenciate.

Kayalune wrote:If I want to know something I can think about the question and get an answer back that I know doesn't come from me. Not all the times, but enough times that it stands out.

It sounds like a communication between dissociated parts.

Kayalune wrote:When I walk or talk.. sometimes I forget how to do that? It feels like driving this body without a license, trying to figure it out as we go. It is very uncomfortable and disruptive of functioning. The constant tug of war going on in this body while walking, thinking, talking... you can't go left and right at the same time... if you do you'll end up stuck. I end up stuck a lot.

It could be dissociation or executive dysfunction or both. Don't hesitate to research a bit about "executive dysfunction" and see if it matches your experience or only matches part of your experience. Comorbidities happen more often than we imagine.

Kayalune wrote:People can seem strangers and friends at the same time. One 'me' knows who this person is and has a relationship with them, another 'me' knows who this person is but doesn't have a relationship with them -> they know the other person doesn't know them. It's uncomfortable and stressful. When this happens it feels like I am about to be called out on not being the me they think they're talking to.

It does sound like dissociation to me.

Kayalune wrote:I can feel like I am multiple ages at the same time that clash with each other. I'd forget how old I am and have to calculate when someone asks. it makes me feel stupid for forgetting how old I am.

I experience the same. It's annoying. I tend to shrug it of joking that "It changes every year I cannot keep track".

Kayalune wrote:Conclusion: I feel like an impostor in my own life.

Impostor syndrome is something that I have seen in many dissociative persons. (But also in other people so it's not a symptom specific to dissociation but I digress.) Feeing that you are living a life that is not yours is very specific to dissociation, according to my knowledge. (But I do not know everything so, grain of salt, always.)

I know that knowing your diagnosis can help a lot with recovery. But you do not always need to know your exact diagnosis as long as you have key-words that are consistent enough with your condition so that you can have access to the proper treatment and ressources.

Example: one does not need to know exatly all of their dys- issues in order to know that looking up "dys" ressources can give them tools to help. One does not need to know what specific complex dissociative disorder they match in order to find useful ressources such as "Coping with trauma related dissociation". (All complex dissociative disorders are caused by the same things and are treated the same way. So, why bother giving them many labels? )

Of course it's always possible to have many other comorbidities and to need other complementary kinds of support and treatment. Therefore, always be on the lookout for the funky things of life and in case of doubt, always double check with a trained therapist.

I hope I was of some help.

[quote="ArbreMonde"]
I hope I was of some help.[/quote]

Yes you are, thank you so much for taking the time to read and reply to my post. Much appreciated!

Kayalune wrote:tl;dr: it ended up being a list of symptoms I experience, comments are welcome and appreciated!

A collection of thoughts and other things on my mind:

So much denial and coming up with 'reasons' why I can't have DID: It wasn't bad enough. For example: 'X did not happen to me so that's why I can't have DID'. Whatever X is, can change from day to day. There is always something that I did not experience that I think is a criteria for having DID even though I know it isn't. (I am diagnosed with OSDD, DP/DR)

What does switching feel like? Sometimes I experience waking up in the middle of doing something, suddenly becoming aware of my own existence, even thinking :'Hey, I'm back'. But I haven't been anywhere? It feels weird.

Other times I can tell in hindsight that things that have happened earlier in the day were not things that I did. Even though I remember doing them, it doesn't feel like it was me. I do not experience black outs or other kinds of time loss. I can always remember what I did, however sometimes the content of what happened can be blurry. For example: Going to therapy and knowing I went there but having a hard time remembering what we talked about, even if it was an hour ago. Or sending an email and knowing that I sent the email but the content of what I wrote is blurry.

A period in my life is about to end and I don't know what happens next and it scares me. The way I used to live, assuming I was a singlet, doesn't work anymore and it feels like I have to reinvent my life. There is a lot of uncertainty going on... what kind of work am I going to do? Can I still afford to live in my apartment? It interferes with therapy because with all this uncertainty I can afford destabilizing too much so I'm holding. I have to remain functioning. There is nothing I can fall back to but me.

I don't have a set of strangers living in this body with me, I have a set of different me's that can switch with each other. Sometimes I end up in a situation where the wrong 'me' is present. We all have different names (internally), looks, different views on the world, ages,our experiences etc.. but in the end they're all me and not me at all at the same time.

I can be doing my thing all day, nothing going on, everything's fine and then catch a glimpse of myself in the mirror and be totally out of it. Feeling so different on the inside than what this body looks on the outside. The inside self/selves and the outside self are so different. Looks, voice, mannerism..

Am I hearing voices? Yes and no. I can argue with my thoughts and have conversations with myself in my head. Don't we all? maybe... Where's the line? Does the internal talking that other (non-systems) experience interfere with their functioning in daily life? Can they control it?

I know things that I don't know how I know them. The knowledge just appears sometimes as if someone put it there for me. The other way around is also true: Something that I want to say... can just disappear mid sentence and only the knowledge of that it existed before is left. I knew 'it' was there without remembering what 'it' is. Someone took it. But maybe I just have a bad attention span? No I don't it's too specific for that.

If I want to know something I can think about the question and get an answer back that I know doesn't come from me. Not all the times, but enough times that it stands out.

When I walk or talk.. sometimes I forget how to do that? It feels like driving this body without a license, trying to figure it out as we go. It is very uncomfortable and disruptive of functioning. The constant tug of war going on in this body while walking, thinking, talking... you can't go left and right at the same time... if you do you'll end up stuck. I end up stuck a lot.

People can seem strangers and friends at the same time. One 'me' knows who this person is and has a relationship with them, another 'me' knows who this person is but doesn't have a relationship with them -> they know the other person doesn't know them. It's uncomfortable and stressful. When this happens it feels like I am about to be called out on not being the me they think they're talking to.

I can feel like I am multiple ages at the same time that clash with each other. I'd forget how old I am and have to calculate when someone asks. it makes me feel stupid for forgetting how old I am.

Conclusion: I feel like an impostor in my own life.

I can relate to a lot of this also. I feel more like there are 'different me's' than a lot of different strangers in my head, but some of the different me's think/thought they were the only one, whereas others knew they were others but liked to 'sneak out' and could somehow block 'the host' (the personality real life others expected to see in the body) from knowing they existed.

Though the daily host has changed a few times over the years. This has caused difficulties with relationships and long term friendships for me also if someone would 'come out' and find we were staying at a friends house and they didn't really relate to the friend but had to continue pretending to be the last host because we were at that moment in time unable to leave the situation.

As far as 'forgetting how to walk and talk' etc goes I have had versions of me that believed they were 'culturally deaf' (in the sense that sign language was our first and chosen language to use, despite the fact we could speak as we didn't start having hearing problems until mid-teens). Also after some kind of neurological attack where we ended up in hospital unable to walk (tested for RR MS at the time) we had one host who continued to believe they still could not walk at all for many years after it. I think social media meant that carried on for much longer than it might have done as that alter/self was also the SM persona so was on it most of everyday and of course then neighbours etc knew us to be someone who was in a wheelchair.

[b]The end of a journey[/b]

Today marks the first day of the new month. Just as the month of April has come to an end, some journeys I have taken in my life are coming to a close soon.

I have worked at my current job for some time now and I slowly came to realise that I no longer enjoy my work. Wondering if my struggle to increase work hours after being on sick leave for over a year of being is because of finding out there is a system, I realised that it wasn't just me. I feel useless at work. It doesn't bring me enrgy anymore and I am starting to actively dislike it. The steps to a new job have been taken recently and it makes be anxious. How are we going to be able to hold down a job? What kind of work will be fitting for us?

Another journey that comes to an end or at least changes in direction is therapy. I am scared for the changes. It's hard to remain hopeful and trust that it will turn out better for us. There are so many triggers and I don't know if I will get through this all.

Things have been so hard the last few months

It's been a while and a lot has happened. Too much to write down honestly. The big thing that we're working on right now is trying to find words to describe what happens when no one in particular fronts. Because sometimes that's just what it is. Who is that? Awareness with no sense of identity? Autopilot? 'Self'?

I'd really appreciate your thoughts on this matter.

Kayla

I call this "autopilot". Neurologically, it is what happens when the brain functions on very low levels of anchoring into the reality, with a lot of dissociation / depersonnalisation / derealization.

Different persons have different triggers for this state: boredom, stress, hours of the day, meeting with specific persons, tiredness...

You will find anchoring exercises in "Coping with trauma related dissociation" as well as on various internet websites through searching "anchoring exercises".