How DID creates uncertainty

This topic is laughable for me, but I am going to try to write about it anyway.

I feel uncertain, unclear, unsure, and confused throughout each of my every days. Those terms might all be synonymous, but I actually don’t know at this moment.

I am married, and I don’t know how my spouse has tolerated me for 20 years. She asks me what I want for dinner, and I don’t know. She wants to know if I want to go to such and such happening this weekend, and I don’t know. Do I need anything from the grocery store? I don’t know. What did I do today? Not really sure. How are you feeling? I don’t know.

The list is endless, and something she has to deal with everyday. Needless to say, it causes her a lot of stress.

Internally, it causes me a lot of stress, too. I try so hard to answer my own questions of myself, and I can’t come to an answer that sticks longer than 30 minutes.

As someone who experiences Dissociative Identity Disorder (DID), my brain operates very differently than a person who is what we call a “singleton.”

My life is like living in a giant high-rise apartment building. Lots of people live in my brain, and sometimes they stay holed up in their apartment, and other times they are out and about giving me advice or commenting on my life. These residents have the ability to influence my thoughts and behavior, and frequently I don’t even realize they are doing it.

Probably most difficult of all, my fellow residents have the ability to take my brain and body out for a spin, and they get to have their say with what happens in our life at those times.

My wife doesn’t always notice when this happens. Sometimes she just thinks I am in a different mood. She does catch me when one of the other residents acts very differently than me, like if they act like they are 8 and don’t know how to get food from our kitchen. She also catches me in an amnesia mess when I am under a lot of stress.

Recently I have been under a lot of stress dealing with suicidal feelings, loss, and trying to figure out if I need to go into a hospital for my own safety.

My feelings about all these topics change from hour to hour. Parts of me (other residents) can have really strong opinions about things, so my wife is rightfully stressed and confused when I tell her I am fine and not going into any damn hospital and ask her to stop talking to these places she has been trying to arrange care. The next day, I will often wake up feeling complete opposite, and lately haven’t had the memory for these conversations I am having with her when I am completely overwhelmed.

I get her frustration as I experience it with myself.

My brain is inconsistent and all over the place with things. I have a hard time distinguishing my thoughts and feelings from the others residing in our residence.

I can have a moment where I feel certain that killing myself is the answer to the situation I am in. Then later, I think of my kids and how I can’t do that to them no matter how much pain I am in. Other times, it feels like my kids are so far away from me that the voices in my head make sense when they convince me my children will be better off without me.

It’s a lot of daily confusion that my brain and body has become accustomed to.

I try really hard to know what I want or what is best for me, but the reality is I can’t figure it out.

This latest bout of intense suicidal feelings has been especially hard. Right now I am having a rational moment and am concerned by the thoughts and behaviors around suicide coming from me.

On one hand I know I should be in a hospital for my own safety, but the confusion starts when I begin thinking how oppressive, dangerous, and uncomfortable (they are cold, exhausting, you have to eat unhealthy food, they won’t let me take supplements, they won’t let my younger parts have a stuffed animal to comfort them, they have abused me in the past, they won’t let you leave, and they often want to heavily drug you). And these are only a few of the negative trade offs you get for staying “safe” by going to a hospital.

Days go by, and I have no idea what to do. This is how I operate. Heck, I scare myself when I realize my life is going by quickly while I am in this haze.

I struggle with whether I should make plans for later in the week because I have no idea if I will be home or in a hospital. I usually don’t make any plans, then I have missed out on more living.

In the meantime, I have engaged in suicidal behavior that I have kept completely secret because I don’t want others making this decision for me.

I know, it makes no sense. I can’t make decisions and don’t want others to make decisions for me either. It seems like my lack of decisions are safer than others making them for me.

Welcome to my world.

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.”


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?

Lacking anger, shame and depression prevail

Today, I feel no anger toward the many people who have abused me throughout life.

I know it gets complicated when it is your family, and sometimes we do weird shit to protect false ideas about our families.

But, I don’t even feel anger toward the strangers or people who mean nothing to me.

I have to think it is more about feeling anger than it is protecting the people. Maybe I am protecting myself from this anger?

It is weird to me because I have no trouble getting angry about things that happen in current day. I don’t like to hold onto anger because I think it creates toxicity in oneself to not let it go, but I do feel it is healthy to breathe anger into the situations or people that deserve our anger.

I think about my past, the people who hurt me, and I think I should feel anger toward those people who have ruined so much of my life. Internally, I feel and hear nothing. Crickets. Paralysis.

I have heard unexpressed anger turns into depression. I have tons of depression….

Living in a DID system can make the idea of trying to reach the anger feel impossible. It is kept far away from me for some reason.

Though I think I can handle the anger because my anger doesn’t scare me today, I have to believe there is some internal wisdom protecting me from this anger.

Or, maybe it is really just fear. Maybe I only think I am good with anger, and I am unknowingly terrified of the anger that must exist somewhere within me.

Maybe I don’t feel as though I deserve to be angry?

I am very in touch with my shame today, which means I feel as though I or we are bad.

After decades have gone by, I am still trying to control the abusive situations by believing they happened because I am inherently bad. I still struggle to fix this “bad” that exists within me.

When you grow up with extreme abuse and more perpetrators than you can name, it is hard not to believe it is your fault. You are the common denominator. Perpetrators even found me in adulthood, which is even harder to explain to myself.

I think of myself in terms of energy sometimes. I think of that child who attracted perpetrators. I think she must have had an energy about her that perpetrators could pick up on.

Is it wrong to be angry with yourself for putting out this energy into the world?

I think of my own daughter. I would definitely not blame her if perpetrators came into contact with her.

If she was sitting on a man’s lap and he got an erection, I would grab her off his lap and shove that man down to the ground. It would not be her fault, and I would be there to protect her.

So, why don’t I give myself the same treatment? Mostly because my parents did not value me enough to keep me safe from people and themselves.

The message they carved into my brain is that I don’t matter, and am only useful to them for their sick pleasures of torture and sex.

It’s challenging to build a healthy self after being raised with those messages.

It is incomprehensible to me how parents can treat a child the way I was treated.

I want to say it is because they were so sick, but I really still struggle every day with the idea that there is something so inherently wrong with me from the day that I was born that I deserved this.

I know I will never heal holding onto these beliefs, but how does one let go of what feels so much like their truth?

Switching between identities

Normally, I switch a lot during therapy because we are dealing with triggering material. Outside of therapy, it is usually more controlled and subtle. Sometimes, because I have co-consciousness with my other identities, I don’t even realize I have switched at first.

There are times when it is like the box of crayons (my identities) have been thrown up in the air and my identities don’t know which way is up. During these times, different parts pop up to “front” the body in no particular logical order.

In a system of other identities like mine (Dissociative Identity Disorder), there needs to be rhyme or reason to what parts are out when. For instance, certain parts need to be out for our children, as these parts know how to function as a parent. Other parts need to be out with my spouse, as these parts are in relationship with her, and are appropriate to have a sexual relationship with her.

This past week, my system feels like the internal house is burning down, and we don’t have the order and reason we normally do for who is out at any given moment.

My spouse, who knows I have DID, but doesn’t usually notice my switches, has definitely noticed this week. Little parts and angry parts and parts who like to drink alcohol have been out a lot. None of these ways is my normal way of being with her. Even though we have multiple parts who can be out with her, they are similar enough in a range of expressions that she knows what to expect.

The chaos and anxiety is high in our inner world. We are trying each day to tame it and get back to our normal. It sometimes seems like it is happening slowly, and other times feels like it is not happening at all.

I had a neurofeedback session a couple of days ago that was supposed to help with the depression and anxiety. It did help, but still the underlying chaos in my brain is still hanging around.

My memory is horrible right now. In fact, I can’t even remember what set us down this path we are on.

My spouse is being helpful and taking over more of the parenting jobs right now.

A couple of days ago I had my kids in the car and they had been arguing with each other and then both asking for something that I would have to say “no” to, and then listen to them both respectively melt down. Instead of saying no, I found myself not being able to breathe or talk. I was paralyzed. I said nothing. I fantasized about getting out of the car and leaving them there.

After that experience with my children, I knew I needed a break. I am usually rock solid with my kids. Instead, I was becoming paralyzed with anxiety, which is not helpful to my children, even though they didn’t even notice.

My switching is more like a Rolodex this past week. Rolodex switching is no fun. It is scary to go from identity to identity with no rhyme or reason.

To function at the level my life is set up for, I need to have more controlled switching. Otherwise, I will end up in the hospital and on the streets and lose everything I have fought to achieve in my small life.

It is funny, my private insurance company has denied my outpatient treatment, and even made it so my antidepressant is unaffordable. That’s fine, because I don’t like to take medicine anyway. On one level, I really believe they would like me to kill myself so they don’t have to pay for my claims anymore. But, if I don’t kill myself, it means my life goes backwards and they have to pay for inpatient treatment again, which is more than what it would cost for the entire year of getting me the outpatient treatment I need to avoid the hospital. Makes no sense, and don’t have the mental energy to keep fighting them.

I will do my best to hang on today. To try to move back toward our normal. It is unusual for me to be in this state of chaos for this long. I am worried, but I will probably forget that I am worried shortly.

Having DID is no picnic. It is not scary the way it is portrayed in the movies. Mostly just scary to the person who has it.

Living an inauthentic life

I grew up keeping my entire life a secret. I didn’t discuss with anyone the pain and abuse I was enduring. I also kept my internal world of other inside people a secret.

I knew it was not safe to discuss what was going on with me with others. I learned that my many abusers knew how to exploit me the more they knew about me and my inner system of people.

I would like to say this didn’t happen to me as an adult, but it did. When I was 21, I had my first psychiatric hospitalization for Major Depression, Anxiety, and severe suicidal ideation.

During this very lengthy hospital stay, a therapist on the hospital staff took a special interest in me. She would spend extra time talking to me, and made sure I knew I was special to her. Being 21, I had no idea the direction this was going.

I craved this attention from the hospital therapist, who incidentally was not my primary therapist. I wasn’t used to someone knowing the ugly truth about who I was, and still care about me. It was intoxicating.

It turns out, this hospital therapist was a master predator. She was one of the best I had ever experienced. She learned my inner system of people that began unfolding in front of her. She used that knowledge to exploit me sexually for 9 months.

The hospital knew what was happening and fired her to protect themselves. Sadly, the hospital and my private psychiatrist and therapist who were all aware of it did nothing to help me with the situation. They only worried about their liability in the matter. The betrayal of my private therapist and psychiatrist was worse than the sexual abuse I experienced from the hospital therapist.

So, trusting people with information about my inner world is really difficult. Everything I hear inside my head says to keep it private. The world can’t be trusted.

I live in this self-induced private Hell because I don’t want to be hurt any more. The worst part of this for me is that I don’t get to live an authentic life because no one truly knows me.

I have been married for 20 years, and you would think that person would know me. Nope. I hide things going on with me everyday.

I have pockets of people I can share different things with. My suicidal feelings are often the biggest secrets I keep.

I haven’t found it to be useful to share these feelings, and let’s face it, people don’t really want to know anyway. They say or think they do, but it only stresses people because they get scared about being powerless in the situation.

People would rather wake up one day to the news of my suicide thinking they had no idea. I am fine giving that to them.

Still, I hate living such an inauthentic life. No one knows the demons I wrestle with in my head. They don’t know the many people I share my body with that I must juggle. They don’t know the pain, anxiety, and desire to commit suicide I struggle with every day.

Instead, I do what I am used to. I ignore me and give everyone the me that they want to see. I can do happy or at least normal on many days. It is just another character role to play.

It leaves me in isolation where I am most comfortable. Some days I wish this wasn’t me, but the auto-pilot in me is strong.

Is my inauthentic life my own fault, or is it the wisest decision?

Maybe, one day I will live authentically, and my true struggle will be the story people know about me. That would be nice. Being a prisoner in my own mind is its own terror I subject myself to.

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.