Share your experience anyone?

Dear All,

I’m posting this after a conversation with lifelongthing, who as moderator has made sure this is within forum rules. Lifelongthing has advised me to keep this as anonymous as possible so I cannot be personally identified, which is why it is a little vague – I hope you understand:

I have the opportunity to give a presentation about DID at a mental health event soon. The presentation will involve a short talk on my part (“what is DID”) and a large poster which will be on display for several days and read by many attendees. There will be dozens of psychologists, neuroscientists, social scientists and philosophers at this event, many of whom do research that can be relevant to better understanding trauma and dissociation. I’m going there to raise awareness of DID and give people reasons why they should be doing research in this area.

This is where I want to enlist your help: I think nobody can better explain why DID research matters than people who live with it every day. I therefore wanted to invite anyone who feels like it to contribute your own opinions in the form of a short text, letter or drawing that I will then put on the poster. I will not change or interpret your contributions in any way except in so far as I will make sure they are absolutely anonymous.

This is NOT a survey or research project ABOUT people with DID - I see it more as a safe and anonymous way in which people with DID can express their opinions about mental health science and practice to the scientists it concerns. Science has a tendency to speak about people in the third person – this is one safe way we can talk back.

Below are a few questions for inspiration, but please feel free to ignore them and write whatever you like:

- What would you say to a bunch of scientists who may be in a position to do research on DID?
- Why do you think research into DID matters?
- What kind of research would you like to see?
- What aspects of DID should researchers look at more (e.g. biological aspects, social aspects of violence and trauma, the inner experience of DID, therapeutic approaches….)

In addition, you could also write about the following:

- What would you like researchers to know about what it is like to live with DID?
- What would you like researchers to understand about your inner experience as a multiple?

Please keep in mind that what you write will be read by complete strangers who may or may not be traumatised themselves. Therefore please keep information general, i.e. do not include any information you would not want strangers to read or that could be triggering for someone else. In particular, please do not include any graphic descriptions of abuse in your text or anything that may allow anyone to identify you personally. Other than that, it is entirely up to you what you write.

It is also entirely up to you if only one alter from a system contributes or several or all – I would recommend though that you get your system’s consent before writing anything as I do not want this to cause conflict for any system. Contributions from littles are very welcome, but please make sure in that case adult parts keep an eye on their safety (as I have no possibility of checking).

I will record people’s reactions at the event and feed them back to you via the forum.

If you would like to participate, please post replies in the forum or send them to me via PM. Any questions, please use the same route.

Many thanks for reading,
tribe

Dear Tribe,

This is great opportunity, and thank you so much for putting your time and effort into raising awareness of DID with a view to progressing research and understanding in this area.

_

I think it's important to research DID as the fact that one child with one whole consciousness can break like a mirror, their consciousness shattered into parts, demonstrates the weird and wonderful abilities of the brain. It raises many questions for those curious as to how the brain works.

A child can grow up with memories of traumatic experiences hidden from them in parts of the split consciousness. These parts are separate and can operate at their own will – I know this is possible because I live with it everyday but I am aware that some do not believe it exists. I understand parts of my consciousness are aware of the trauma that caused dissociation, but how is it possible that each part is different in the way of seeing and being in the world? Are we each a product of our memories – what we have learnt and experienced? Or is it just that these dissociated parts hold trauma memories as well as some qualities of the original personality? Nature or nurture?

I would like to see research into the experience of having DID, so when patients seek therapy and share their experiences they can be normalised. Everyone is different, but everyone with DID shares in the same frightening symptoms unique to the disorder. To understand you're not alone is part of connecting with the world again.

This was written by the ANP/Host. I was diagnosed with DDNOS by the NHS and then DID and CPTSD by a private psychologist. I now live co-consciously (for the majority of the time) with 6 separate parts of me. These parts hold memories of abuse from primary caregivers between the ages of approx. 2 – 8 years old.
_



Tribe, please feel free to use parts of what I have said rather than whole sentences if you would like to.

Although I have not yet been diagnosed here is a short list of my symptoms that I can recall. I'm adding to this list whenever I can think of something.

Psychiatric History :
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- ADHD

- Depression or Manic Depression

- Diagnosed with Undifferentiated Schizophrenia

- Hospitalized twice, once voluntary once involuntary.

Amnesia :
======================

- Sometimes Missing large blocks of my life. I will forget most of years behind me but years later all memories come back.

An example of this is when I was in the early stages of high school. I was both bullied and the bully at the school i attended when I was 11-12 however, I never got any satisfaction out of hitting people, it was more of just something I did . I got sent to an alternative schooling program. When returning to high school with many of the same people who I have bullied or may have been bullied by I would walk up to these people and introduce myself as though nothing had ever happened in the past. Several years later I would remember both periods of my life clearly and would be very embarassed about this. I will not forget the ENTIRE portion of my life behind me, but many parts of it will be gone. I will usually just remember the rudimentary facts and only some people.
Recently, my father had to tell me of an event where the chief of police and the entire school staff board had to have a meeting with me for a certain fight that I had at at school. I have no recollection of this event.

- Day to day forgetfulness and extremely consistent inability to find things.

- Friends and significant others telling me I am acting a certain way other than I normally act and having no recollection of these events.

- I feel as though Time to me is like crackers placed together with peanut butter smeared over them (The "crackers" may be months, weeks, days or hours) The basic premise of this analogy is that I understand a basic and rudimentary passing of time (I understand that the crackers are under the peanut butter) however, I always have trouble giving exact specific passings of time or what date or year I was doing any particular activity Eg. Job Resume. However, My minute to minute time is usually extremely accurate and can tell you if it has been 5-10-20-30 minutes or an hour. (However, this is also not very consistent and sometimes hours will pass and it will feel as though it has been a short amount of time.)

- Recently Left a comfortable life building a business to move to france to be homeless. Upon returning, I was in a severely Derealed state and "came to" after a couple of months. I also have little to no recollection of france. I have picture and some video memories however, I cannot place them in any sort of chronological order. I only remember a small tidbit of a conversation with the partner that I was in business in saying that "everything was sold" and that its all over.

- The most confusing part of amnesia to me is I will say many "big letter" words without ever having read them and will usually have to google these words that I have said to find the meaning of them, when I do google them they make perfect sense in the sentence that I have placed them in. This is an extremely common occurence and does not have to do with just single words, but also with complete sentences and sometimes entire conversations. It feels as though I have never said that word in my entire life and might actually be true. There will also be times when I forget all of my vocabulary and am deduced to a very limited amount of words I can use. However, I have no trouble typing out my full vocabulary.

The same concept applies to activities as well. Usually forgetting how to do things is uncommon and i just need a short reminder to get back to doing this activity, which is normal however sometimes I will entirely forget something that I knew I could do before.

On the opposite end, I will sometimes do things VERY well that I do not remember having ever learned in the past.

Depersonalization :
===================

Although Uncommon, I have had many instances which I can recall losing cognitive control over myself and have felt like I am watching myself do something. This is sometimes a very harrowing feeling and can be "spotty" in memory. During these episodes nothing seems real and it sometimes feels as if I am dreaming the event.

Derealization :
===================

Although I understand that the world is real and I am also real, I feel That I am constantly not in reality. This is something that comes and goes extremely frequently and I am in an almost trance like state during this experience. I have full cognitive control over myself however, my body and senses are very numb during these experiences. I usually pinch/slap/ or hurt myself in some manner to try to come back into reality. The sense of Pain is much less during these experiences. Sometimes I feel that I can do this at will, and this was during bicycle injuries and accidents. Most of the time this happens I feel that I am "floating" and in Dreamland.

Identity Confusion :
====================

I have never felt a strong sense of identity or a feeling of "fitting in" to any specific genre.
Sometimes this feeling remains extremely active, and during the phase in which almost no identity exists, I begin to "Dereal" and it seems as though I am "floating" Sometimes during these episodes it feels as though a Very "strong" part of me begins to take over, I can picture this person usually by their style of dress and their general ideals. I begin to assume this "Identity." When this identity "Assumes" me an entirely new set of memories, ideals, and responses to the world are present.
There is sometimes amnesia when this happens. Friends or significant others have to tell me that I was acting this way, or being this person. Sometimes I Just feel it myself but have no control over it and almost "forget" the person I was before I assumed this Identity. Sometimes during these stages, when friends show me pictures of myself or I look in the mirror it confuses me and i think "Is that really what I look like?"

"Coming To"

Times in my life where I have been within a certain identity then questioning what I am doing and why I am this way. This feeling is coupled with extreme anxiety and is usually followed by the same debilitating headache and also a very intense feeling of embrassment. A disorientation of sorts. These events are not accomponied by amnesia.

There is always a battle inside me about which part takes center stage, when none of "Them" take center stage I go through that headache and remain in fetal position. Sometimes this is followed by "mini seizures" or just uncontrolled convulsing. The "seizure" is not rapid but is more like me fighting myself. It is as if I go "haywire" and My mind does not know how to respond at all to anything and my body just begins to convulse.

Other times, Like I have been recently I feel like I am fighting myself and another part of me wants to VERY VERY strongly take over. I can feel that this "part of me" "alter" or "person" is a very negative person and I am struggling everyday to keep this person at bay, it is right behind the persona that I am in now. I have been prescribed Klonopin and this has helped me ignore this person.

I feel as though my mind is a carousel sometimes and that I feel random emotions and different people kind of taking turns "saying their piece" or "giving their emotion" I have recently dubbed these "phantom emotions" some of the medication I am on has blocked some of these emotions. Klonopin however, seems to be the only medication for me that completely blocks off all of this and allows me to focus on the here and now.


Confusion :
=========

I go through very extremely frequent bouts about who I am and what my place is in this world. Usually this feeling puts me back into "reality" and then I start to Dereal again and I begin to get headaches when thinking of this. Often times, These headaches have been debilitating and leave me rolled up in a ball or in an upright fetal position in the shower to make the headaches go away. The fetal position headaches are usually short when I am around people but have sometimes lasted for hours. There is a very "blank" feeling during this time where little to no emotions can manifest.

Currently, I am jobless, nearly/soon to be homeless, and am struggling to find a way to get diagnosed properly and get the proper treatment for my symptoms so I can live a consistent life that contributes to society in some way. At the moment this is seems to be nearly impossible as anyone who specializes in dissociative disorders is usually a private practice psychologist and has very high fees which I cannot afford. (I cannot afford to even get diagnosed)

Another thing that happens with me is a VERY strong compulsion to buy certain things that really have no meaning to me at that moment.

I left from a mental health assessment, with a feeling of despair and hopelessness. I hadn't been able to talk, had been shouted and and told I had wasted their time. They couldn't tell if I was ill or not so discharged me. Years later I'm still afraid to ask for help incase they don't understand and I'm left feeling the same again afterwards. I feel research is important into understanding how people like us work, how we come because we want help but then we unable to talk due to lack of trust/something inside us is not allowed to tell. If those staff that day had better understanding, then we may have left with hope that one day we can get better, hope that there is a reason to get through each day.

If you want to use it you're welcome to adapt/shorten it as long as it gets the same understanding across. They say if you want a name to put on it Hannah and Steph don't mind using theirs lol.

Hi,
I've been trying to figure out how to explain myself better. Maybe you can edit it to sound more intelligent.

I wish therapists, psychologists etc. had a better screening tool. I started reaching out when was 24 years old and was always given a diagnosis of bipolar disorder. I continued to have the same issues that brought me to therapy in the first place and soon gave up. Finally, at 39 years old I found a therapist who asked the right questions and was formally diagnosed with DID. Since then my life makes since the meds and talk therapy are working. Other symptoms like anorexia and drug addiction are no longer a problem.
If the therapists 20 years ago would have asked the right questions I wouldn't have raised my daughter confused and dissociated.

I hope this is helpful for you and good luck on your presentation.

We're an undiagnosed system, but we will definitely post our experience tomorrow, when we have more time.

We have been struggling with DID since the body was around 6 years old, and it continues to affect our daily lives. We've been hospitalized four times, including right now, and each time we were given a different diagnosis, like schizophrenia, depression, anxiety disorder, etc. DID is one of the most misdiagnosed disorders there is, and that's only one of the reasons that we think raising awareness for it is extremely important. It's impossible to get the right treatment, to find a therapist or doctor who can help you, when none of them know enough about DID to diagnose you.

In our most recent hospitalization experience, we were told that we absolutely had to integrate, and that there was no other option. They basically tried to force us to all become one person, and continue to do so to this day. They likely will until I'm discharged. They don't know enough to be able to work with us to improve our regular lives, instead of trying to make us do something that we absolutely don't want to do. When you have 11, mostly very unstable people living in one body, it becomes extremely difficult to function in everyday life. And when you go to a hospital to get help only to be told that the only option you have is one that you can't choose, it makes you feel a little hopeless.

DID is just as serious as any other disorder, and it can cause depression, suicidal thoughts, panic attacks, anxiety, general instability, etc. With that in mind, don't you think that people should be educated in it just as much as they are in other disorders?

It's been a while since I've said anything.. Uhm I've changed really rapidly cause of this and cause of new stresses coming onto the body that Plan, an alter who finally said his name is Tanner, doesn't really appreciate. It just makes him hate everything even more. But basically all our experiences have been a system based around survival.

Research matters because it is not being done to the degree it would be helpful to people with DID, or the world at large. It seems that one of the reasons it is not being researched is because the diagnosis is so questionable, and also because it is not resolved by medication so it is not getting the big dollars of pharmaceutical companies. It has also not been studied as to the beneficial impact to be thinking processes with a different life perspective than singletons, for example good communication is essential, but no one knows this better than a Multiple.

I think the best method of research would be through correlation studies of archival records. Records exist in psychiatric hospitals and records could also be gathered through DID literature - both scientific and historical - written by Multiples. I would also include data collection from Multiples who blog and tweet and join groups such as the groups on Yahoo, Psychforum, experience project, etc ... where Multiples could be found "hanging around" and willing to participate. I also think that studies should be done on people in the professional psychology world, and students that go into those fields to discover the nature of their biases whether or not to believe in the DSM-V manual (DID diagnosis) and another study to determine ALL available treatments. It is a natural block to the community to decide that because it is easier, less time consuming, and less interactive/draining to decide that "integration" is the best method of choice. One part of that study would be to find Multiples who are successful by various means and then learn what helped them. One other point of data collection would be through the prison and "forced-psych" wards. There is a big contention whether people go into the system because their Multiple symptoms, or whether people claim to have systems to avoid punishment and responsibility. This discredits the field and community of DID. There should also be a media campaign after results are found to try to detract from the stigma of being Multiple - such as jokes, comedy, theater, politics, and any organization that wants to state there are more than one way of looking at things or that someone did a flip-flop. It is hard to build credibility when the term DID or Multiple is used so derogatorily.

The objective of research would be to categorize and formulate new information that would be usable for further study. Such as if a long-term "talking" therapy was found to be the most solvent and humanistic treatment for the symptoms of Multiplicity, then it should studied and used to train countless therapists who do not have a handle on the diagnosis and treatment at present. Some of the work should go toward building statistical analysis of the the prevalence in our culture including self-diagnosed and physician/psychiatric diagnosis. And work should occur to look into information out there on "healthy Multiplicity" as a lifestyle - such as Homosexuality was once considered a disorder, but it then became recognized just as an alternative lifestyle. This is not to say that Multiples do not need psychological or financial support while working toward understanding their nature and identity states (good and bad). But, there is a version of psychology that works with "well-being" other than "disordered." This would be very helpful to those of us out here with Multiplicity.

Lastly, it is extremely important to put research results, especially through papers out in the general public. Most information on DID is not available without high cost to the people who would most benefit reading and trying to understand what is known about their situation. Most writing is done in journals or associations that don't allow knowledge back into the community, so it is a constant dribble happening where mythological information is being re-circulated and regenerated as if that is proof of it's reality, but in truth reality has long since been sifted out. For example, the concept of Multiplicity being produced by "quack" psychiatrists. If a psychiatrist believes he will be blackballed in this manner if diagnosing Multiplicity, why would he be motivated to make the diagnosis. Surely, their is better research out there that would provide answers closer to reality. As well, critical work that has disabled Multiplicity in heavy force is through False Memory. False memory was and is not being used to question EVERYONE's memory - think ALL court cases where testimony is given, it is aimed only at abuse victims - especially sex abuse victims and in large part all people with DID ... this has got to be the crime of the century, but as yet it is not being contested.

Thank you for doing this work in looking for avenues of research. The field of DID severely needs this kind of help and assistance. Please help us with research.

Thanks
A ... Another Multiple