My Experience (Undiagnosed)

Hello! I am a 22 (F) not currently diagnosed with a dissociative disorder, but I need a safe space to talk about my symptoms anonymously and my symptoms align to some extent, I think. No pressure to read; this post is long. I’ve just never really been able to talk about this before.

I have experienced most of these symptoms for most of my life, varying in intensity at different periods in my life. Right now, I am experiencing all of these symptoms strongly, hence my need to understand them.

Dissociation:
I often feel a sense of unreality. I am not me, the world is not real, etc.
I will periodically spend time with friends/family, lose track of what's happening, and then suddenly not recognize my friends/family. In these instances, I am aware of who they are (as if someone told me) but I have no emotional attachment to them. It is as if I’ve just met them and someone told me “This is your Aunt X, you’re safe with her” or even the equivalent of a trusted friend telling me about a fun time they had with their aunt and describing her, and then I’m hanging out with that aunt––I know my friend likes her, but I don’t know her personally. That’ll be about all I’ve got. If I really work on remembering things, I can remember things I’ve done with said family member, but don’t connect to it emotionally.
In these instances, the lack of knowledge doesn’t tend to feel jarring, it just feels like someone closed the curtains in my brain or there’s a cloth over my eyes, and then things get sharper again and I’m more aware. At this point, there will often be a sense of seeing things differently, like “Hm, the car suddenly feels bigger” or “I really like the wall color in here all of a sudden.” In the moment of the perception change, I also tend to feel a physical shift in my mind. It feels like the brain version of someone brushing past me in line or accidentally bumping into me. It’s not uncomfortable, but it’s distinct, and it happens a lot, usually followed by some sort of perception change.
To my knowledge, I don’t fully lose time, but my perception of time can be majorly skewed (If I focus, I know what’s happened in a day, it just feels distant and unemotional, like recalling the events of a book/movie).
Similarly, if I go for a walk (for example) I often have a feeling of being lost, but it’s like I have someone with me who does know where we are and can give me directions, because I do know where to go. It’s very strange because I simultaneously have no clue where I am but also have directions in my brain?
I have difficulty remembering the specifics of my childhood. Most therapists have said that my symptoms suggest severe/extensive childhood trauma. I can’t remember any trauma and when talking to trusted adults who were present during my childhood, this theory doesn’t seem plausible.

Emotions:
My typical state lately is a lack of emotion/feeling, but if I do have an emotional response, it tends to appear out of nowhere and surprise me.
I think of myself as having intense emotions, but realized that this description may be misleading. Lately, my experience of intense emotions has been more the equivalent of me living emotionlessly, experiencing a stimulus, and then being surprised when someone around me acts extremely to that stimulus (except the someone is in my brain). It's strange because I can feel that strong emotion, and it comes from somewhere in me, but it doesn’t feel like mine?
There have been many times in my life (especially lately) where if I start to experience extreme emotion, the emotion is almost immediately eradicated. The problem is not solved, it just feels like the emotion was confiscated.

Identity:
I have a lot of identity confusion. I tend to just go along with what the people around me want/feel/think. If I try to figure out what I want/feel/think, I’m usually totally unable to figure it out, or bombarded by so many differing things that I can’t make sense of anything. I usually experience this bombardment as sudden urges, instincts, or vague/muted feelings that I don’t connect to fully or at all.
Therapists have suggested that I try to identify tokens/things that I connect with or create mood boards to express myself. I have tried these things before and I usually end up extremely overwhelmed and drawn in by nearly all of the options. In other words, if I try to identify the picture of a flower that most represents me, I might search “different types of flowers” and then it’s as if every flower I see intrigues a different part of me. I’ll often feel positive about Flower A and then feel a different type of positive about Flower B, but then when I look back at Flower A to determine which one I like more, I suddenly don’t like Flower A or I feel vastly differently about it. And then that perception won’t stick either. I usually get confused and give up, saying that every flower/aesthetic appeals to me in some way.
If someone wants me to express an opinion on something, I usually have no opinion on the spot, or literally guess what my opinion might be. Through the next few hours, I either remain similarly unbothered, or experience an extreme and overwhelming consideration of EVERY opinion I could imagine having about the topic. Sometimes I experience the opinions as mine, but usually, it's more equivalent to being in a room with a bunch of people who are loudly expressing their strong opinions.

Appearance:
Since I was around 12, I started having symptoms where I couldn’t recognize my reflection, didn’t connect to or respond to my name, and felt very detached from myself. Over time, those symptoms have continued, but bother me less. Now, I conceptualize them more with this thought process: “My body, name, etc. do not represent me and do not feel like me, BUT it’s safer to keep these features of myself unaltered than to attempt to externally represent myself accurately.” In other terms, for about 10 years, it’s felt like my body, name, sense of style, etc., are all just a shell that I don’t identify with, but protects me.

Extras:
It will often happen that my therapist will prompt me to try to keep track of certain things (my mood/mood changes, exactly what I do each day, my preferences on any given day, etc.). I will often be excited to do this and consistently log for up to five days. Usually, at this point, I have a sudden change of perspective and become convinced that the logging is unnecessary or bad for me. I very clearly do not forget to log. I simply become convinced that it’s not a good idea. Similarly, over the past two years, I have begun looking into dissociative disorders more because I feel my symptoms align in certain ways. Usually, I am only able to research for a limited period of time before I am convinced that it’s not a good idea for me to continue.
I will also sometimes have physical reactions when researching dissociation and dissociative disorders (which is not an experience I have had while researching any other diagnosis). For example, I may have extreme emotions, I commonly get goosebumps, start shivering, etc. I will also sometimes be aware of myself scrolling through an article about dissociation, but I only see the article through a haze and can’t read it. It feels like I have to scroll through the whole article so that my brain can get the information, but then I literally have no access to it during or afterward.
I frequently get the sense that I know something but just can’t access the knowledge.
In the past, in therapy, I have been trying to puzzle out why I feel this or that way or why a certain symptom is happening. It will often happen that I get a feeling that I need to stop looking into that or that I’m not ready to know that yet. It can feel frustrating, because I WANT to know, but the sense that I’m not ready or should stop usually feels very benevolent and I usually feel a sense of peace about it even if I don’t want to. It feels like me but not me at the same time.

I appreciate any and all feedback. I am not looking for a diagnosis, just support and community. It has been helpful for me just to conceptualize my experience in this way.

Hi just quick note because we are about to drive across country. I've read about half your post and I want to say that what you are describing sounds like a common discociative experience. Discociative disorders come on a sliding scale from full blown other people to that emotion didn't happen to me. It sounds like whatever system you have is looking after you realy well if you can't access a therapist there are some good exercises on did-sos don't assume your parts are fully formed enough to answer back there is debate around whether putting to much energy into contacting a fragment actually causes a fragment to gain a level of sentience and control that it wouldn't normally have (it becomes a willogenic alter with traumagenic oragin). So unless you have a therapist of a friend to support you only do the exercises that are catering to ptsd as a whole not the did system specific stuff.

Good luck

lyrical01 wrote:I often feel a sense of unreality. I am not me, the world is not real, etc.

Also called "depersonnalisation / derealisation" (also called DP/DR).

lyrical01 wrote:I am aware of who they are (as if someone told me) but I have no emotional attachment to them. It is as if I’ve just met them and someone told me “This is your Aunt X, you’re safe with her”

This would be consistent with a dissociation from your emotions, a numbing of the emotions. It is a form of depersonnalisation. Also with a dissociation from your personal memories with the person as well as a disconnection from your sense of "this happened to/with me".

lyrical01 wrote:At this point, there will often be a sense of seeing things differently, like “Hm, the car suddenly feels bigger” or “I really like the wall color in here all of a sudden.” In the moment of the perception change, I also tend to feel a physical shift in my mind.

This could be consistent with DP/DR and/or a form of dissociative switch.

lyrical01 wrote:my perception of time can be majorly skewed (If I focus, I know what’s happened in a day, it just feels distant and unemotional, like recalling the events of a book/movie).

Consistent with dissociation and/or ADHD.

lyrical01 wrote:I simultaneously have no clue where I am but also have directions in my brain?

Consistent with dissociation, when two different dissociated parts are active at the same time, one connected to your sense of "me" who has no clue and the other knowing the directions and where to go.

lyrical01 wrote:I have difficulty remembering the specifics of my childhood. Most therapists have said that my symptoms suggest severe/extensive childhood trauma. I can’t remember any trauma and when talking to trusted adults who were present during my childhood, this theory doesn’t seem plausible.

Trauma does not mean violence. Trauma can be: disorganized attachment, sickness, having caregiver who are not available enough, moving house and being stressed about it, being autistic and in sensory/emotional overload, being ADHD and under/over stimulated all the time, etc. Check the articles from the list of DID ressources (cf link in my signature) to learn more about it.

lyrical01 wrote:My typical state lately is a lack of emotion/feeling, but if I do have an emotional response, it tends to appear out of nowhere and surprise me.

Consistent with dissociation and/or ADHD, autism, and a few other things too.

lyrical01 wrote:Lately, my experience of intense emotions has been more the equivalent of me living emotionlessly, experiencing a stimulus, and then being surprised when someone around me acts extremely to that stimulus (except the someone is in my brain).

Consistent with complex dissociation (OSDD, DID, partial DID... the specifics depend on the intensity of the symptoms). The emotion is here but experienced by a dissociated part so it feels "not me" while being "in my brain" at the same time.

lyrical01 wrote:if I start to experience extreme emotion, the emotion is almost immediately eradicated. The problem is not solved, it just feels like the emotion was confiscated.

Consistent with an internal trigger: you get triggered by the intensity of the emotion and automatically it's shoved under the rug (dissociated) because it's too intense to be felt.

lyrical01 wrote:I tend to just go along with what the people around me want/feel/think. If I try to figure out what I want/feel/think, I’m usually totally unable to figure it out, or bombarded by so many differing things that I can’t make sense of anything. I usually experience this bombardment as sudden urges, instincts, or vague/muted feelings that I don’t connect to fully or at all.

Consistent with dissociation. Do not hesitate to have a look at the book "Coping with trauma related dissociation" because it contains exercises to learn to untangle things and make sense of stuff and make choices and set boundaries etc.

The confusion you describe with e.g. the flowers is consistent with being dissociated and each dissociated part has a different opinion about themself. Janina Fisher talks about how to un-tangle everything in "Healing the fragmented selves of trauma survivors".

lyrical01 wrote:Sometimes I experience the opinions as mine, but usually, it's more equivalent to being in a room with a bunch of people who are loudly expressing their strong opinions.

This is such an OSDD/DID mood to be honest. xD I'm so glad to be myself past this point because gosh the constant mental noise!

lyrical01 wrote:I couldn’t recognize my reflection, didn’t connect to or respond to my name, and felt very detached from myself.

Depersonnalisation.

lyrical01 wrote:Usually, at this point, I have a sudden change of perspective and become convinced that the logging is unnecessary or bad for me.

It would be consistent with a "protection" part kicking in and thinking it's dangerous that the dissociation symptoms get logged and displayed. Same with the "cannot continue researching it because it could be dangerous".

Once again I advise to look at "Coping with trauma related dissociation" and "Healing the fragmented selves" as well as all the other ressources listed in the ressources thread (link in my signature). They are all about how to stay safe, how to keep safe, how to heal, how to set boundaries to protect oneself, etc. Most of these ressources can be useful for everybody, not only dissociative people. "Coping with..." is a book about how to have a stable everyday life and it's useful for every person on this planet!

lyrical01 wrote:I will also sometimes have physical reactions when researching dissociation and dissociative disorders (which is not an experience I have had while researching any other diagnosis)

What you describe are the somatic symptoms of dissociation. It means you get super stressed out about researching dissociation and some parts of your brain wants you to get the fork away from becoming aware that it's dissociation, which is why you feel it's like a benevolent presence inside of you who wants to shield you from the pain of knowing. It is a way for your brain to try to protect you from the stress of becoming aware that you dissociate.

Baby steps! Also, take your time, read slowly, take notes. It can be interesting, later on, to mark what informations make you dissociate the most because it's a sign you have an old wound here that needs healing. Sometimes this wound can seem mundaine to the eyes of an adult but when it happened to you as a child it was overwhelming hence why you dissociated. What makes the dissociation is the intensity of the stress. As an example: one of my (now healed) trauma was developed from going to a firework show at night as a toddler. Nothing bad happened but it made me so stressed out, terrified me so much, that I traumatized. Over fireworks. A toddler's brain is a drama queen and a baby's brain is even worse so, remember that the trauma needs to be put back into the context of what age you were when it happened!

lyrical01 wrote:I am not looking for a diagnosis

Good thing because we cannot provide any But we can tell you if it is consistent or not with dissociation and point you towards ressources and self-help stuff and offer support.

Hello and welcome. I wanted to add a few things to what was said before.

lyrical01 wrote:To my knowledge, I don’t fully lose time, but my perception of time can be majorly skewed (If I focus, I know what’s happened in a day, it just feels distant and unemotional, like recalling the events of a book/movie).

I don't fully lose time either; however, I don't always know what happens when one of the other alters is out. As Arbremonde said, it can be dissociation, ADHD, or a few other things, but I wanted you to know that lost time doesn't always happen with dissociation. For me/us, it can mean losing experiences.

lyrical01 wrote:I have difficulty remembering the specifics of my childhood. Most therapists have said that my symptoms suggest severe/extensive childhood trauma. I can’t remember any trauma and when talking to trusted adults who were present during my childhood, this theory doesn’t seem plausible.

Sometimes a trusted adult may not see what they did as traumatizing. Our parents weren't intentionally abusive, but they caused a lot of trauma to us and that lead others to victimize us without their knowledge. We're autistic and that meant that many things a non-autistic child might shrug off meant that we were hurt badly by it.

As for remembering, it's a slow process. We have many parts who are just barely unraveling what happened so that the whole system at least knows what happened.

lyrical01 wrote:Usually, at this point, I have a sudden change of perspective and become convinced that the logging is unnecessary or bad for me. I very clearly do not forget to log. I simply become convinced that it’s not a good idea...I frequently get the sense that I know something but just can’t access the knowledge.

Recently, I found evidence that we had been researching DID for decades before finally being confronted by a friend who has worked with other systems before. At that point, our gatekeeper, main protector and caregiver all decided it was time to start healing. We were now in a safe space to confront those pains and issues.

It's a slow process and one you don't want to take too quickly. It's something that our psychologist reiterates quite often so that we don't feel frustrated that the process is slow. Today marks the beginning of the ninth month since getting diagnosed, and we're still putting pieces together. I know what happened, but for me it is like a report still rather than a memory.

I wanted to share so that you know you aren't alone and that others have gone through some of the same stuff. I do hope that you and your therapists find answers. Sometimes it just helps to learn the language that the psychologists use so that it is easier to communicate.

Take care and good luck,
Violette

Eliseahorse wrote: don't assume your parts are fully formed enough to answer back there is debate around whether putting to much energy into contacting a fragment actually causes a fragment to gain a level of sentience and control that it wouldn't normally have (it becomes a willogenic alter with traumagenic oragin)

Sometimes I wish someone had mentioned that to me when I very first came on..originally thinking it was just Maladaptive Daydreaming and most of them were just 'imaginary friends or something' created by an overactive imagination!

I put alot of energy into trying to help all these 'lost souls' I thought were trapped inside feeling unloved etc and now seem to have an whole internal (very sentient) family!

To be fair we've got through some difficult years together and though some are/have been a pain in the ..... actually giving them that time out and letting those parts develop has been interesting and rewarding. "I' feel I understand life and people a lot more than I did than when I very first found this board.

Kit