When my Dissociation makes me feel lost

It has been a long time since I have written anything. I have been doing some better, but struggling more than ever with feeling lost.

There are moments when I forget about my Dissociative Disorder, and then I am talking to a good friend about his son and I can’t remember his son’s name.

These moments of amnesia make me afraid to pose as normal to the world. I have thought about trying to go back to work, then I feel this inner flooding of anxiety.

I ask inside to my other parts what we are so afraid of about going back to work. Apparently, they just don’t think we can do it.

It is possibly true. I know I may seem like I am ok sometimes, but then I look back on my day and realize I only accomplished 1-2 things. On an intense day, I might have struggled to get a 3rd thing done.

I am not sure why I can’t get more done in a day, except for this damn amnesia and feeling confused and lost so much.

I have been trying my best to be present for my children as they both have issues going on and need me. Some moments I am good about that, other days I feel inner parts distance themselves from the children and contemplate suicide.

The therapy is a struggle lately. My child parts are so hurt and don’t understand why we are seeing the T less often. Our insurance would rather pay for hospitalization than outpatient care. Brilliant business people.

The therapist wants us to trust her, but the younger parts feel like she doesn’t care about us. The T struggles with this because she says she doesn’t understand what she can do to show parts she cares about them.

Then, the parts reveal that because she is not abusing us, she doesn’t care about us.

She says she is never going to abuse us, so she is never going to care about us?

Then there are older parts who say we should just stop going to therapy. This doesn’t go far because the Little’s surface and put us in a Little hurt state of mind.

Anyway, like I said, I am feeling lost. Don’t know what to do about much. Contemplating giving up my career and going to work for a low paying job or no job at all. Can’t seem to make any decision about that or anything else.

Lost. That is me.

My journey has changed

Some of you may have noticed that I have been missing in action for the past month or so.

I was really not doing well and needed intensive inpatient help with managing the symptoms of my DID and PTSD, particularly the level of suicidality I was experiencing.

I decided to go inpatient and it lasted longer than I expected. If I wouldn’t have really pushed to get out, I still easily met the criteria of someone who needed to be inpatient. But alas, I always feel terribly restless and triggered when I am inpatient, so a month was as much as I could do.

I am now happily home with my family and working to transition back into my real life. Still figuring this out and hope to share it with you as I uncover the new path of my journey.

I experienced incredible levels of amnesia and confusion while inpatient, but I was still able to gain some important insights into a new direction for my life.

I plan to share these new plans with you as I unpack myself back into the real world and my real life.

For now, I can say I realize I do have a life to live while doing this work, and I don’t have to “fix” my life before I can start living it.

I am also happy to say I am not currently feeling suicidal, which is remarkable because that is my typical normal. I know better than to get overly excited about this as I know it can change on a dime, but I do feel a sliver of hope that it is currently absent.

Speaking of hope, I did manage to gain some hope despite the incredible amnesia, confusion, transference, and uncomfortableness I experienced staying in this inpatient unit. Nothing like being locked up and power taken from you as a survivor that is seemingly required for inpatient treatment.

I am feeling well today and I am looking forward to sharing my new journey with you, and my experience during my inpatient stay.

Thank you from the bottom of my heart for all the support I received from you all.

With love and hope to you all,

Kathy

DID is NOT a party

Lacking a consistent voice makes me confusing to those outside and inside of me.

At night, I often write things, whether a blog article, letter to someone, or a quick text. Sometimes I shop on Amazon while others are sleeping in my house. The difference for me is when I wake up in the morning it is a gradual unfolding of what I did the night before.

I see e-mails from Amazon alerting me to a purchase I don’t remember, and often don’t need.

I sometimes get an emergency call from my therapist before I have even awoken asking me if I am alright. That usually means some part of me has been texting or emailing her.

I almost never remember blog posts that have been written under our Mistaken Survival blog. I read them over and over, each time feeling like the first time I have read it, even though it was authored by this shared mind of mine.

I have learned to shrug and stay quiet in response to other people’s reactions to something I have done that wasn’t me. I kind of freeze because I know it was me, but it also wasn’t me. What’s the protocol for that scenario?

The mind is so adaptive. It is amazing I get through the days, but somehow I do.

It feels a lot like being lost, then found, then lost, then confused, then found, and on and on.

Unfortunately, this makes for a really spotty memory. And though I get by with the adaptive skills of my brain, it leaves me empty on the days I have the capacity to think about how little I remember about my life.

I read earlier today someone writing about how they don’t think of Dissociative Identity Disorder as a disorder at all. They see it more of a blessing and an alternative way of living.

Though I try my best to respect other’s differing opinions, it pisses me off to hear someone who has this disorder glorify it and act like it is a positive.

Here is the one true thing most people believe about DID (though not all parts inside of me agree with this opinion): if you have DID, it helped you survive as a young child when your life was so traumatic and overwhelming that your mind would not have survived otherwise.

If you truly have DID, it means there is major distress going on in your life. You can’t get the diagnosis if you are not impaired in some way.

Though I love all parts of me, even those I disagree with or can’t understand, there is nothing wonderful or great about the way we live.

I wouldn’t wish this chaos and confusion and missing life on my worst enemy. It sucks. It is not fun.

Some people describe elaborate parts who have hobbies and like to play like children. Those parts for me are hurt and damaged, and they are not having fun. They are mostly terrified every minute of their experiences.

Carrying around trauma on a daily basis and trying to survive is not fun. My life is extremely difficult, and profoundly sad due to the lack of connection I feel to the world and those in it.

This is no party. For me, it is a serious ordeal of surviving a life of torment and confusion.

I’ll let you have your opinion, and do my best to be respectful, but I can’t make that promise on a bad day.

Lack of mental health resources increases risk of suicide in those with Dissociative Identity Disorder

It’s frustrating to see the public service messages and articles discussing how we need to get people who are having suicidal ideation into treatment centers to prevent them from killing themselves.

Though I appreciate the sentiment of the anti-suicide campaigns, the reality is people who have a diagnosis of Dissociative Identity Disorder (DID) do not receive the same access of care afforded to every other mental health diagnosis in the DSM V.

DID is the most stigmatized diagnosis within the mental health community.

Interestingly, DID is considered to be amongst the highest risk for suicide. Some estimates say that at least 70% of people with DID have attempted suicide.

With those staggering numbers, one would think the mental health community and the suicide prevention community would be working to improve access to mental health care for those with DID. Nope.

In the 1990s, there were more therapists, psychiatric hospitals, and day treatment programs available to those with a DID diagnosis. The False Memory Foundation (largely supported by those accused of child abuse) succeeded in its goal to end treatment resources for those suffering from DID. This result protects child abusers.

Today, it is extremely difficult to find an experienced outpatient therapist who is willing to treat DID, so many of the highest risk people either have no mental health therapy, or are working with a therapist who doesn’t understand the complexity of treating DID.

Most people who suffer from DID reach points of crisis where they need extra support and hospitalization.

The extra support could look like a day treatment program that understands trauma and dissociation, but after all my research in the United States, I am aware of only 3 programs serving this population (I am not sure that one is still operating) that accept insurance as payment. Since day treatment programs are designed to be community based, it is not very helpful to the majority of people suffering from DID who don’t live in those communities.

Without trained therapists and lack of day treatment programs to provide extra support, the person with DID is more likely to end up in a serious suicidal crisis with an extreme lack of resources available to them.

In a best-case scenario, the person with DID has private mental health insurance or Medicare, both of which offer psychiatric hospital coverage.

Here’s the problems people with DID run into when they are in need of intensive crisis intervention:

1. Although trauma hospital programs have become more common today, these hospital programs will not treat people with DID. They flat out say “we are not set up to treat DID.”

Huh?

I imagine when I hear programs disclose that information, it likely means one of these things:

-we don’t want someone with DID because it will be disruptive to our program, which is completely unfounded.

– we don’t believe these people really have DID, so we don’t want to work with them. People often like to believe this is a rare disorder, it is not.

-since people with DID have a higher risk of suicide, we don’t want to risk our liability by accepting them into our program.

2. There are only six hospital programs that accept insurance that have proficiency in treating DID. I will name them here with no endorsement of them since they are of varying quality:

-University Behavioral Health in Texas

-Sheppard Pratt in Maryland

-River Oaks in Louisiana

– Del Amo in California

– Forest View in Michigan

-Psychiatric Institute of Washington (PIW) in D.C.

Now, this may seem like a lot if you believe the disorder is rare, which it isn’t, and if you don’t take into account that people with DID are likely to have limited emotional and financial resources to travel to these destinations if their insurance actually covers the place.

In addition, these hospital programs more often than not have a waiting list to get in, which doesn’t work for the patient who is truly in a suicidal crisis.

California has created a few really nice DID programs that offer cutting-edge therapies for people with DID. Only problem, these programs are only available to those who can self-pay, typically $40-50k a month. Unfortunately, the symptoms of DID are not likely to coincide with being wealthy enough to afford such places.

3. You might be asking why doesn’t a person with DID just go to their local community mental health hospital? This is another huge topic, but I will do my best to sum it up.

Your typical community-based hospital doesn’t believe in the diagnosis of DID, so when you enter that system you are likely to get a diagnosis of schizophrenia, borderline personality disorder, or bipolar. When you receive those diagnoses, it means the mental health system is largely going to solve your crisis through intense medication therapy. There is no medication that treats DID, so getting blasted with medications does more harm than good.

Also, it is important to understand that people with DID have been highly traumatized in their lives, or they wouldn’t have the diagnosis to begin with. By asking a person to enter a community-based mental health program, you are guaranteeing that they will be re-traumatized by the way they will be treated and the lack of understanding of what is happening with them.

Sadly, we recently witnessed the prevalence of sexual abuse in our world through the “me too” campaign.

People with DID are not born with this condition. It is a result of being subjected to severe trauma in early childhood, typically severe sexual, physical, and emotional abuse.

I wonder, where are the crusaders for this population of victims?

Where is Oprah Winfrey, Brene Brown, Angelina Jolie, Demi Lovato, or any other person of influence who could make a difference in the suffering of those with DID?

I don’t even understand why the for profit hospitals aren’t all over trying to serve this underserved population simply to make money.

Somewhere in mental health history it was decided that the DID population is invisible, expendable, and just don’t matter.

The irony, those of us with DID come from families where the message that we don’t matter was drilled into our heads. Sadly, our current mental health system only reinforces that belief.

My final thought, would the suicide statistics be as high for those with DID if we had adequate resources for those suffering with this disorder?

Does it matter to you?

Missing memories

I am missing the memories of most of my childhood before age 12. What I can remember is about 90% traumatic memories. I know I probably had more than 10% of my childhood being good memories, but I don’t have them.

When I think back on everything I can remember from my childhood, I was always feeling fearful, even in moments where it doesn’t seem like there should be fear for any reason.

I can remember 3 memories when I was in kindergarten.

The first is remembering that the best thing about kindergarten was that on “your day,” you got to go out in the hall and finger-paint. I know it was a highlight for me, but at the same time I feel intense fear thinking about the memory, and the scariness of the hall I was in.

The second memory was when one of my best friends came to school without underwear on while she was wearing a dress. I remember how mortified I was for her, and I was fearful because I knew it had something to do with the community we lived in together.

The third thing I can remember was being in the kindergarten teacher’s office area with her and another teacher doing a lice check on me. I gathered from their conversation it was not the first time they had me back there for a lice check. I remember them being sure I had lice and stumped when they couldn’t find any. I imagine the lice check was because I was dirty and unkempt. It was a very shaming experience, and again I felt fearful.

For the next 5 years at school, I can only remember 3 or 4 memories, and all of those are very scary and traumatic.

When I turned 12, my parents had quit drinking and moved our family away from the community we grew up in, and we literally became new people who had pretend normal backgrounds. There was never any mention or recognition of the past.

For whatever reason, I didn’t think anything of it at the time. In fact, I didn’t think anything of it until a therapist of mine some 38 years later pointed out how odd it was that my family had done that. I just shrugged it off because I never had the expectation that my childhood and family should make sense.

As a very grown adult, it is super frustrating to not have memories of my childhood and a lot of my adult life. Even though my adult life has not been terribly traumatic by my childhood standards, I still can’t remember things all the time.

The answer to this problem as I have come to believe is that because parts of me did not developmentally integrate when I was in childhood, I need to integrate us into one as an adult. Or, at the very least get parts of me who are stuck living in past trauma into the present.

To accomplish integration or removing active trauma from our head, we have to remember and process some of the memories. This is a difficult task for someone who can’t remember as much as I do.

I have been pushing my system for memories for a while now. I gamed my system and forced the process. As a result, I recently had some new memories come in rapid fire succession.

The memories I had before these new memories were horrific, so I wasn’t particularly worried as I honestly felt like things couldn’t be much worse. I was wrong.

There was a reason those memories were being kept from me. It has been almost a month since they first came up, and they have ruined me. I can’t seem to pull out of this constant suicidal crisis for longer than 10 minutes.

The new memories have shook me to the core. It has made it so I am not who I thought I was. A parent who I thought loved me and cared for me was not that at all.

It leaves me feeling like I was truly nothing to no one growing up. No one.

It is a hard pill to swallow.

I got what I wanted. I forced memories to come that probably should have never come.

I honestly don’t know if I will survive this suicidal crisis I am in. Everyday I just barely scrape by.

I am not sure I want to exist with this new sense of my identity. I wish I could just shake it off and go on with my ok adult life. But, I can’t let go of my past, and don’t know if I ever will. And if I never let go, living this haunted life until the end is an awful existence.

I don’t know if anyone understands what it feels like to have this haunting day-in-and-out.

It is like living in sheer terror everyday. Who the hell wants that?

The obliteration of DID walls

I usually have a somewhat manageable life, though still difficult for sure. I typically manage with a lot of amnesia and a balancing of the competing ideas and feelings from the other souls who reside in my body.

There are souls in my body who feel hopeless, hurt, and angry, and usually deal with those feelings by wanting to commit suicide.

Usually I can help our system of souls through these tough times, but lately it has become increasingly more difficult.

Having had the diagnosis of Dissociative Identity Disorder for 30 years, I have reached a place where the system works pretty well together on most days.

We all seem to have co-consciousness as far as I can tell, and we don’t hate each other as far as I know. I explain it this way because new souls seem to appear often in therapy. In fact, I do not even try to keep track of them, and I don’t mean any disrespect to those souls, but my mind literally cannot remember it all.

As a system, there are some rules that we agree to live by. One of the most important ones is to not kill ourselves because of the damage it would do to our children (or my children, since not everyone claims them).

We also have the rule of not committing adultery since some of us are married. Some souls don’t like this, but they have agreed to it anyway in the spirit of cooperation and living a life with less chaos.

Another rule would be that younger souls, or noticeably different acting/sounding older souls, are not to interact with the outside children in our family as I believe this would cause great harm to my children.

These rules are usually followed fairly well by most everyone in the system. Sometimes a soul might be so upset that they choose to ignore the rule about no suicide or self-harm, but we have systems in place to stop those parts from acting on these feelings, or at least minimizing the expression of them. This is something we routinely have to deal with, and something we stay hyper vigilant about.

In our 20s, we had one soul in our system who decided to quietly kill ourselves. This soul was almost successful, so it is something we are always watching out for, and thankfully, haven’t had a serious attempt since then, though we have had less serious attempts.

My system has been slapped in the face with a lot of new revelations lately, namely, it is becoming crystal clear who our family was, and the awful things they have done to us.

In the past, we have always had these memories, but what is new is the ability to start putting it together in a narrative of our lives, which means a whole lot of grief is staring us down.

Our new narrative is honest, but incredibly painful to face this truth and stay planted on earth.

This new narrative has left souls scrambling to make sense of it all. To hold the truth in our hearts and not die is quite the challenge.

Our system has become quite destabilized. We find ourselves switching from one soul to the next without any control or order to it. Our memory and executive function has dropped to whatever the lowest score would be on that scale. We can barely complete a thought in conversation without switching to another soul and then back.

We have not honored the rule of not switching souls in front of my children. I have put every last piece of energy into trying to stay present for them, but have found myself “waking up” to another soul interacting with my children. This has never happened before.

I find it difficult to complete thoughts I am trying to express, and found myself borrowing the thoughts of other souls to try to complete an idea I was speaking about. This has not worked out very well as most of us are very different from one another, and many inside have some very destructive ways of thinking.

My internal world feels like it is being obliterated, which leaves a dissociative person like myself extremely confused and barely able to function. The neat and orderly walls of our system have been something manageable for the system. But suddenly those walls don’t seem to be there so much.

My therapist pointed out the possibility that the souls within my body may be “transitioning” to a place of more wholeness (or integration), which understandably has left me completely confused and overwhelmed to suddenly be experiencing their thoughts and feelings in no particular orderly process.

I’ll be honest, this last week I have had many moments where I haven’t been coherent in what I was trying to express. I have changed the way I have sounded 5 times in a ten minute period.

In this moment of rest, I would like to be happy about this possibility of integration (yes, we are in the camp who wants it), but we are also in a state of extreme suicidal ideation, planning, and acting out. I am trying my best to stay vigilant, but I also know I don’t have the skills or the strong desire for this vigilance because of the passive influence from the other souls.

I should be in a hospital given the level of chaos and difficulty in me stopping the serious suicidal feelings and plans. I just don’t have the energy or inclination to go to a hospital.

If I go into a hospital for safety, I travel out of state to one of the few places that understands DID. I can’t just go up the road to psych hospitals in my city because they will not believe in my DID, so will more than likely shoot me up with antipsychotics to “fix” me. Not willing to do that.

When I am more of a clear thinking person, I would not risk what I am risking. I keep hoping I will wake up to a better day because I know this won’t last forever. But, I also need to keep in mind the people with DID who successfully kill themselves.

This is an evolving situation. I am hoping things become more manageable again, but not at the expense of possible progress.

I will try to update you again as to where I land next. Stay tuned.

I am not who I think I am

Today, I began my day getting triggered by my 6 year old son. I keep getting startled by him while I am sleeping in the morning, which then causes me to release all my fight or flight hormones in my body, and then I feel stressed and crappy at the beginning of my day.

Fortunately, it only happens while I am sleeping.

After getting startled awake, I then went to my neurofeedback appointment, which is a good place to go when you are feeling that way because they can help me bring my body back down to calm.

After calming my body, I then did another neurofeedback protocol I have been working with the last few weeks called “deep states.” I like this deep states work because it feels like you are dreaming while you are awake, and it helps you get in touch with your unconscious mind.

It is not like I go and my mind just accesses all my unconscious memories, but it does help me get a smidge more each time I do it.

Today, I processed a lot of familiar memories while in this deep state, and then I started having new memories that were upsetting to say the least.

I want to not believe these new memories from today, but even after I left I had the weirdest experience of having more and more memories involving the same person. It is like my brain would not stop downloading information into my awareness until there was no more room and I was utterly exhausted.

For better or worse, I had therapy today after neurofeedback.

In therapy, I was overwhelmed and felt suicidal. I had this feeling of impending doom because with these new memories comes the idea that I am not who I think I am.

My therapist thinks it is nonsense (my summation of what she said) that I am not who I think I am, but I don’t agree.

My identity today is based on beliefs I have about my life. It turns out my beliefs are wrong.

I built the foundation of my identity on the belief that my father loved me. No one else in my family did, but I thought my father did. I was wrong.

I have gone from believing I came from a family where one person cared about me, to understanding that I really came from a family where I did not matter to anyone, and was only in this family for their sick needs.

It makes sense now. When my father was dying, and I was sitting there with him everyday, he looked at me with pity, not love. He told others he loved them, but not me.

My false picture and selective memory of my father helped me create who I am. Since that is now known to be false, I am nothing but the garbage they believed I was.

I know I can get through this and define myself, but at the moment it doesn’t seem possible. The building blocks that make up my life are not what I thought.

I know some people might think I am dense for not realizing my missing childhood memories are going to make me feel horrible. But, I already know of horrific things that have happened to me. My childhood is already unbelievably horrible.

How can it be worse? I guess I answered my own question.