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

The slowing clock on my madness

I have been trying. Really hard. Trying to get my life back. Taken yet again November 2014.

I feel like a failure. I fail myself over and over. I fail my family. My friends. My therapist. Most importantly my children.

Stuck. I have been stuck so much of the time over the past 3+ years. I can’t move. Can’t get out permanently for any length of time.

I am supposed to be the master of my own life. I try, but can’t feel it or make it work. Sometimes briefly, then it crashes down on me hard.

Frustration with myself. Sometimes I know what is wrong with me. Those times I eventually fix it. Climb back to looking semi-normal for those that need it from me.

Lately, I have no understanding. My preoccupation with death. My daily internal conversations. My fantasies about it. It doesn’t end or slow.

I try to be positive. I take the pills my DNA says should work for me. I take the supplements they recommend for me. I do my best to have movement in my life. I try to keep my stress level down and reduce the toxins in my life. I go to therapy.

Still, my feelings of suicide rage through me. Every day.

I try to act as if it is not happening in hopes of fooling myself out of it. It doesn’t work. It waits for me and grabs me solidly every time my mind has a moment to itself.

People say you should get help with this. I want to say, oh, ok, let me go do this so I can get on with my life.

I know help doesn’t exist for me, which is the scariest thing of all. I want it because my family needs me to get it, but I cry inside knowing it doesn’t exist. It is not there, just as I am barely still here.

I know you optimists, or those unfamiliar with particular kinds of madness, don’t agree. You think I am giving up. I have lost my way and just need to find it.

I am doing everything I can. Nothing is working.

I am smart, yet I fail myself. Stuck in the maze. I have always hated mazes. A weak point for me I guess.

No one can save me but myself. But I can’t figure it out. Though I try to look stronger on the outside for those few who are paying attention, I am actually weakening on the inside.

I want to see my 13 year old develop into the amazing child she is. I want to help my 6 year old make the baseball All Star team. I hold these feelings for short moments, then they escape me and I am back in purgatory.

There are those that care for me, but at the end of the day they don’t know what to do to help me. Most of them are barely holding onto their own lives with mediocre sanity.

It doesn’t matter the back story of how I got here because I am here, and the backstory changes nothing.

I love those of you who say you are not giving up on me, but truly have neither the time or energy to try to help what appears to be something not to be helped.

I am not seeking your pity. Don’t feel sorry for me. Feeling sorry for me has never helped. Changing the world does. I wanted to do that, but my inner demons have stopped me dead in my tracks.

Feel pity and empathy for my family as they deserve better than me.

I think they know how much I love them, but maybe they won’t understand the failings of my mind, my inner turmoil about the person I am. The person my family of origin made me into.

I pray my children and spouse have more faith in God than I have been able to hold. I have fought it my entire life, trying to understand why God has not been merciful in the torture he has brought into my life.

Children don’t deserve what you have given me. You say you love me as your child—this is not love. I will not accept man’s free will over your ability to love and be powerful. You did this to me, without mercy, and you expect me to believe you love me.

You have hurt my kids. You have ruined the life I was given. And for what, some lesson about mankind that only a few people will know?

Though God has decided my worth, I ask each of you to pray for my children and my wife. Give them peace and love and understanding.

I have tried so hard to do this for them. I have tried unsuccessfully to get help for my complicated madness.

The places to turn for help are evaporating. The seconds on the clock are vanishing. The madness of the mind wearing out.

My heart has beat for my wife and children. I have fought for them. My battle is losing. I hate myself for not being able to outsmart it.

Hold my family in your prayers and wrap them in the love they deserve.

Blessings to you and yours.

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.”

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?

December, my most brutal month of the year

Oh, December.

The month starts with my birthday, and even after 5 decades, I can’t bring myself to be happy about my birthday.

Growing up, my birthdays were especially painful for me because my family never allowed me to celebrate them. I can’t recall any recognition of my birthday, which just reinforces the cruel messages my family sent to me.

I don’t matter. I don’t really exist. I should do everyone a favor and kill myself.

I wish the birthday thing got easier, but I have actually spent the last two out of three years in psych hospitals for my birthday so I wouldn’t kill myself.

This year I have been really struggling to stay out. I want to be present for my kids’ Christmas month. Yet, every day I am in touch with my struggle and trying to fake my way through the holidays.

Last weekend I tried to do something special for my kids, so I took them to Christmas shows on Saturday and Sunday. Normally it is something I enjoy. Sadly, I feel guilty because I kept looking at my watch to see when the show was going to get over.

Anxiety is flowing underneath the surface.

I am struggling to stay sane, to stay out of the hospital, to not ruin my kids’ Christmas, to stay married, to not run away, to not fire my therapist, to be compassionate with myself when I do erratic things like randomly schedule an appointment with a new therapist whom I know nothing about and not sure why I made the appointment.

My PTSD is especially bad right now. The triggers are happening over little things. Noises. Stupid noises keep triggering me.

I am coming off as crazy to adults who hold a significant conversation with me. I know I am a wreck and acting in ways I really should be hiding.

My narcissistic, abusive mom is coming this week for the holidays. I said she could come because I think it could be her last.

I have to reconcile in my head as she presents herself as a normal person, with the memories of her harming me so severely as her daughter that my life has been mostly ruined.

I am also coming to terms with how much she harmed me by not only doing cruel and extremely abusive things to me, but more importantly, not loving me since I was born.

It is hard to sit with knowing your family doesn’t love you. It is hard to stay grounded to this earth with that knowledge.

But, still I persist through this magical holiday time when families are supposed to go out of their way to show their love for each other. Except in my family of origin it is all a fraud. Yet, we do it anyway.

Hoping tomorrow I do a better job of being holiday happy for my kids as the most important thing for me is for them to have what I did not.

The loneliness of my DID

For the past week, I have been struggling deeply with my Dissociative Identity Disorder (DID).

I have been rage-fully suicidal, and even a few moments of being homicidal. I don’t understand why I am having all these feelings and thoughts.

I don’t even understand why I have been making violent suicide plans that involve punishing someone who hurt me badly.

This is not uncommon for me, to not really understand what is happening within myself, but the degree of anger and extreme suicidality is unusual.

My brain goes from crazy, enraged to numb and dumb. It makes me feel less than human like this.

I have only one person who I can truly discuss all this with, my therapist. Yet, for reasons unknown to me, I decided to fire her this past week.

I went to session and asked her a question about how she knew a fact about my ex-therapist’s office building she mentioned in our last session, and I lost my mind with her attempt at an answer and I filled with mistrust and feeling betrayed, whether justified or not.

I switched through a Rolodex of parts who were losing their minds inside and outside my head. Suddenly, my whole system of parts seemed like they no longer trusted the therapist. This was unexpected for me, the one who tries to manage all of this.

In fact, I quickly found myself banished to a back seat in my own head. Instead, parts who are suicidal and want to punish the ex-therapist announced a violent plan to kill ourselves that they are convinced would wreck her life the way she did ours.

This feels satisfactory to them, but I try to remind them what it would do to my kids, and her kid. My system never wants to hurt kids.

I get it, she is such a fucking narcissist who has shown me no remorse for what she did to me or us. I get this rage. It is so similar to my own mother.

But, I don’t want to end my life to destroy hers. I don’t even want to destroy her perfect little life, but I do wish she would talk to me and tell me how sorry she is for what she did to me. We all know a narcissist isn’t going to do that.

I have been hiding my craziness from my spouse, children, and best friend. People would freak out if they knew what was going through my head.

Everyone wants to put me in a psych ward, and frankly, I am not interested in getting drugged and stuck in one of those places. I would rather risk it on the outside.

I have no one to talk to about this except a small group of people I know through the internet. Even some of them talked about me going into the hospital ☹️.

It’s lonely, trying to hide this madness, trying to keep myself safe, trying to contain the chaotic insanity going on inside when talking to my spouse or children.

Sleep is a good hiding tool, but too much and the spouse figures out something is wrong again.

I have found that really those who go through this similar experience of DID are the only ones who can really understand it. And even so, sometimes it is impossible to get adequate words out to describe what is happening inside.

I want help when I am at this dangerous level of distress, but I haven’t found anything helpful. Hospitals don’t help. They often times do more harm.

I wish my therapist could help me in this situation, but she is merely another human with her own life and trying to help people the best she can.

So, the answer continues to be loneliness, though I am truly thankful for my cyber friends.