A $45 bottle of ketamine got me out of a suicidal crisis & stabilized my DID in just a few hours

I have become super-annoyed by any mention of the 3 phase approach to treating Dissociative Identity Disorder (DID). As put forth in the DID treatment guidelines by the International Society for the Study of Trauma and Dissociation (ISSTD), these are considered the gold-standard recommended steps for therapists who are treating someone with DID:

1. Establishing safety, stabilization, and symptom reduction.

2. Confronting, working through, and integrating traumatic memories; and

3. Identity integration and rehabilitation.

It sounds like an easy formula for assisting those with DID, but like previous treatment recommendations for DID, this 3-step phased approach is seriously flawed and needs updating (it’s been 10 years of minimal success).

Unfortunately, the vast majority of DID patients get stuck in stage 1, or if they manage to get out of stage 1, it is too easy for them to get knocked back into the stage 1 need for safety and stabilization by triggers in life and therapy.

Talk therapy and learning new skills is not effective enough in helping people with DID to successfully master the phase 1 goal of safety and stability because it is too easy for them to fall back into deeply rooted familiar neural pathways that make them unstable again.

The deeply-rooted neural pathways of someone who has DID is what keeps them stuck in a dissociative reaction to stress, which is why it is critical to address rewiring the brain of a DID person in stage 1.

Instead of therapists challenging themselves to figure out how to successfully help their clients master phase 1, they are actually told by these same guidelines that some people just don’t have the capacity to get out of stage 1, and so they can therefore feel ok when their clients stay stuck in phase 1 and a life of misery. This is completely wrong and cruel to those suffering with DID.

It is quite frustrating that the majority of trauma therapists will identify Bessel van der Kolk’s “The Body Keeps the Score” as the book that has most influenced them, but strangely, almost every trauma therapist has little to no expertise in helping with the neurobiological effects of trauma, which is kind of the point of this book.

I believe there is a small percentage of people who can successfully manage this 3-phase approach as it is, but what I see from the vast majority of people I know who have DID, people get stuck in the phase 1 need for safety and stabilization. They may get stabilized, but either by working on trauma or some other life trigger, they slide right back into the need for safety and stabilization, which leads the person with DID to feel like they are failing therapy because it seems impossible to maintain enough forward momentum to make progress in therapy.

When your brain is wired for dissociation and PTSD, you can’t simply rewrite the way the brain functions through talk therapy and skills.

What if the very first step is impossibly flawed because therapists have been giving their clients the wrong advice on how to reach stabilization (DBT skills, mindfulness, CBT therapy, corrective therapeutic relationship, blah, blah). These methods can be helpful, but they don’t help the client achieve a strong enough mastery of safety and stability.

The type of stabilization achieved by talk-therapy and skill building is too weak to endure the triggers faced by the highly traumatized person.

Is it possible the answer to phase one stabilization is outside the traditional therapist’s wheelhouse, and involves neurobiology instead? Something that will rewrite the neural pathways?

Is it also possible that stabilization can occur in days-to-weeks instead of the years therapists typically spend on this with desperate clients?

I believe it is possible there is a much more effective and efficient way for traumatized individuals to get stabilized quickly.

An open mind and a belief in miracles is required at this point.

My Experience

As the pandemic was nearing an end, I found myself loosening up on my fight-or-flight mode of survival that served me extremely well during those stressful months. As good as that might sound, what followed for me was a quick dump into the gutter of mental health hell. Apparently, my mind needed to do something with the build up of 14 months of limited parts activity I experienced to hold it together. If you are confused by this, try to understand that I was in the trauma of the pandemic, and to survive, I could only have around parts who were strong and didn’t feel, just like most of my childhood. The emotional and vulnerable parts were tucked away. The parts of me that had been frozen during the pandemic crisis were starting to rapidly thaw. Their emotions were overwhelming.

I rather quickly became depressed, suicidal, anxious, dissociative, and unable to deal with the stress of my children. Each day, I was becoming more unstable. I had reached a point where I had decided I was going to kill myself or go into a hospital (note, there are no hospitals that treat or believe in DID within my state, or even several states away, which makes this option less likely).

On a scale of 1-10 (10 being the worst), I was a 10 on the suicide scale. I couldn’t even hold onto the love for my children and what my suicide would do to them to prevent me from doing it. I was too far gone, and my suicide was becoming imminent.

How I stumbled upon Ketamine, stopped a serious suicide attempt, and saved my insurance company $30,000

In a complete fluke, a holistic doctor I work with for health issues had just prescribed generic ketamine nasal spray for depression and anxiety, and had no idea of the severity of what I was suffering because I hid it from them like I do most people outside a therapist’s office. I made the decision that I was going to try it as my last ditch effort before I checked out. The imminent risk and permanency of suicide outweighed any reservations I might have had.

The Ketamine Experience

I simply took one small spray of the ketamine in one nostril. I could immediately feel it coming down my throat as there was a slight burning feeling that lasted for a few minutes. After the burning sensation, I could quickly notice I was starting to feel what I would call a manufactured dissociation as it didn’t feel how I normally feel when I dissociate.

The dissociation lasted for 30-45 minutes, and then I felt kind of high. I was feeling emotions like funny, happy, and curious —funny and happy are definitely not normal feelings for me. I knew not to drive my car or make any big decisions. Though I did shoot off one very wordy email I kind of later regretted 😎.

The dissociation and high were gone within 2 hours of the nasal spray. I was left with a sense that my mind had been cleared of cobwebs I didn’t even know were there. I very dramatically had a mental clarity I wasn’t used to. I was much more aware of everything happening in my environment.

By the 3rd hour, I began to evaluate my thoughts and feelings because I knew this was a test to help me figure out what to do with my suicidality and depression. I scanned my brain for thoughts, emotions, or voices of parts, and to my amazement, my suicidal feelings were completely gone, and I had no sense of any depression, anxiety, or even dissociation. I was completely grounded in the present with a strangely crystal clear mind. I was actually worried I was going to have a manic episode because I was feeling so oddly good.

My suicidality went from 10 to 0 in just a few hours.

Later, when my kids each did their behaviors that had been over-stressing me these past few weeks, I felt like a super-parent who was not the least bit phased by their antics.

As it was approaching bedtime, I was worried I wouldn’t be able to go to sleep because: 1. I always struggle with insomnia (and sleep meds don’t always work for me), and 2. I was worried the feeling good and crystal-clear thinking was going to make me want to stay up all night being productive at some random thing. Surprisingly, I took my normal low-dose sleeping pill and easily fell asleep. Even more surprising, I was able to sleep-in the next morning, something my anxiety hadn’t allowed me to do for years.

When the day of my first ketamine dose began, I was looking at either a $30,000+ psychiatric hospitalization, or ending my life and traumatizing my family and friends.

Instead, one spray from a $45 bottle of compounded generic ketamine completely removed me from that suicidal crisis and stabilized me.

My mind has stayed clear, like really sharp, and my emotions have been extremely easy to regulate.

My ability to emotionally regulate was put to the test almost immediately. The day following my first ketamine dose, I was scheduled for a therapy session with my therapist who I was having some serious attachment conflict. The session was indeed volatile, and one that would have normally sent me into a suicidal tailspin. Instead, I noticed I had a few fleeting suicidal feelings during the session, and I moved on, and they didn’t stick with me post session. A highly stressful situation was completely manageable, which is unheard of when it comes to me having attachment conflict in therapy.

Maybe some of you don’t see how big of a deal this is. Before ketamine, I was emotionally wobbly every day. I never knew what little thing might send me off into depression, suicidality, overwhelming anxiety, or into my constant dissociative response pattern that creates quite a bit of amnesia in my life.

My use of ketamine is like someone handed me a brand new life. A life that has been missing for over 30 years. I was finally free of the debilitating existence I had known almost my entire life.

I am finding the experience of my new brain extremely foreign. I don’t feel emotionally overwhelmed. I don’t feel depressed, suicidal, or even dependent on a therapist at this point (I have struggled with severe disorganized attachment, so this is kind of a big deal for me). My mind just feels clear and calm, which I really am not used to.

I waited a couple of days and did a second nasal spray of the ketamine. I was still feeling completely stable before this dose, but I wanted to do what was recommended by the doctor who prescribed it. With the second dose, it was barely noticeable and I didn’t experience the dissociative and feeling high side effects.

I have researched ketamine a lot since then, and I know others typically don’t respond for a week. There are several ways to take in ketamine, and an array of different dosing strategies. The doctor that prescribed the ketamine I used was a believer that low-dose and through the nose to get closest to the brain was the best method.

Ketamine seems to be a miracle for me. Although I live near a big research center that has all sorts of clinical trials going on for ketamine, I know I would be excluded from those studies because of my dissociative disorder (a familiar narrative for those of us with DID). We are just too much with our diagnosis for a lot of things..

Alternatively, there are many ketamine clinics that have set up shop in my state so that they can make a lot of money off this new treatment. Typical treatment prices seem to be around $400 a session, and insurance rarely covers it according to their websites.

For once, the compounding pharmacies seem to be the most economical place to get it, but finding a doctor who will prescribe it this way may be the challenge.

If you are a long-time sufferer who has given up on treatment for DID/CPTSD, or someone who suffers from chronic depression and/or anxiety, I would give ketamine a try if you can get your hands on a legitimate form of the medication. I am not recommending the street drug that is a higher dose of ketamine and will do who knows what to you. Try Googling ketamine near you and see what comes up. There’s lots of research, books, and articles about the way it works and what it has been used for.

There is a fascinating article about using ketamine with complex PTSD trauma survivors here.

I have to believe an angel dropped ketamine in my lap when I was at one of my lowest points. It clearly saved my life, and it just may be offering me the chance at living with a non-traumatized brain. As each day ticks by, I am still amazed at the calm and clarity I feel.

As a takeaway, I hope that each of you who reads this will consider that maybe people with DID aren’t succeeding not because they aren’t working hard-enough, committed enough, smart enough, or don’t have the ego strength or attachment stability to succeed in therapy. Maybe it really has more to do with how their brain is wired, and maybe there are easy fixes such a ketamine that will address the neurobiological effects of developmental trauma.

Just maybe, the most difficult repair is easier than everyone thinks.

Is healing from Dissociative Identity Disorder possible?

I was diagnosed with Dissociative Identity Disorder (DID) in my early twenties. I was in my Senior year of college when I suddenly started having significant psychiatric problems I hadn’t experienced before. Even though my life was actually going very well in the world, my internal experience was crumbling as I had my first Major Depressive episode, panic attacks, and suicidal ideation seemingly coming from nowhere.

I didn’t know what was happening, so I quietly went to the campus mental health center, where the psychiatrist gave me a bottle of Xanax to help me deal with whatever was happening.

It completely consumed my life rather quickly. The pills helped a little, but I was seriously suicidal for unknown reasons.

By some miracle, I had the wherewithal to find a therapist off campus. And then a psychiatrist, and quite quickly, I ended up inpatient at the local psychiatric facility for about six months.

During my time in the hospital, I was trying really hard to understand what was happening to me. I was a mystery to my treatment team, too, as I had so much going for me, why was I doing so poorly?

I started having outrageous transference with my therapist. I felt as though I couldn’t live without her. I would start to get better and approach discharge, and then my therapist would go out of town and I would find myself plotting to kill myself at the hospital. I never had feelings like this about anyone before.

I can remember sitting in a chair thinking in my head that I didn’t understand what was happening. And then I realized there were voices in my head commenting on things or expressing their despair about the therapist. I had always had these voices commenting in my head, but I realized for the first time it was like they were different people with different thoughts. I knew I was going crazy.

I started feeling like I wasn’t in control of my thoughts or behaviors sometimes. I tried to speak about it some to my primary treatment team members, but they didn’t take it too seriously as they knew I was not psychotic.

Back then, I didn’t have the words to properly express my experience of what I now know to be Dissociative Identity Disorder (DID).

When I finally discharged from the hospital, I had a crazy sexually abusive relationship with a counselor from the hospital, and then abruptly decided to get a job at another psychiatric hospital as I was suddenly interested in helping people (and ignored the fact that another part of me had already accepted a job offer from a big corporation).

While I was working at the hospital, I was still trying to figure out me, and would read every patient history, study the DSM, talk to clinicians, sit in on clinical meetings. During my research, I discovered a therapist who specialized in dissociative disorders and trauma therapy.

While still seeing my old therapist back in my college town, I decided to go see the therapist who specialized in dissociation and trauma, and asked her to help me figure out if I had DID.

In case you are wondering, my therapist who I adored and my psychiatrist did not believe in DID.

It is still common today, you have the believers and nonbelievers in the mental health community. It sucks for those of us afflicted.

But I knew I had these strange forces acting within me that I could not explain. I didn’t know anyone with DID back then, so I was really just doing research and grasping at straws to understand what was happening.

It is a blur, but my consultation with the dissociative disorder psychologist led me to a fairly quick diagnosis of DID, and I transferred to her to help me with therapy.

It was a balancing act. I would be in terrible shape during my therapy sessions talking about childhood trauma, and she would also see me as a high functioning successful person at the local hospital when she would come in to see her patients.

What I have found for myself is that if I am around someone who knows I have DID, my parts are more likely to show themselves. My parts found a safe place for them to be “out” and to express their feelings and traumas with the psychologist.

It was a lot. Coming to terms with the truth about my childhood, and learning about all these parts of me.

I managed for a few years to work at the hospital and do intensive outpatient therapy three times a week. Then, the train started coming off the track, and I began a journey of hospital-hopping and instability for the next decade. Sadly, I was so dissociative during this period that I have very little memory of it, so it saddens me to know I lost an entire decade of my life to this illness.

Quite honestly, this was in the 1990s, when there were treatment centers that specialized in DID, but in retrospect, they did not know what they were doing in their attempts to help people with DID. Still, they were important because they were places that understood who we were and what was happening to us, which is not an understanding we could find anywhere else in the world.

As my life was in chaos, and I wasn’t making any progress in therapy, I had a shift in my internal world out of anger toward one of my therapists at the time. This part of me who had enrolled in graduate school to get an MSW had decided that she had enough of the mental health system and the craziness going on in our life.

After ten years of chaos and suicide attempts and more hospitalizations than I can count, with a simple, but determined decision, this part was able to put away the chaos of our lives (the endless number of parts), and we were suddenly living with only 5 parts.

This was manageable.

We had 5 parts who cooperated with one another and didn’t even need therapy or hospitals. The depression, anxiety, and suicidality was suddenly completely gone. We still were not able to sleep without medication, but found doctors to prescribe it for us. Other than that, no mental health care was required.

Our only symptom that we worked to hide every day was our amnesia. We couldn’t remember things that were current (and past important life events), like our neighbor’s first name, or how long it had been since we last spoke to our boss, but we were otherwise doing well.

I don’t want to make light of the amnesia we dealt with during this period as it created enormous anxiety in us everyday that we would be found out that we had a mental illness. But, we knew the skilled clinicians couldn’t help us with this problem, so we did what we do best, we hid our truth.

We lasted about 12-13 years in this fully-functioning (except for the amnesia) period of our life where we were successful in multiple careers, got married, adopted children, bought homes and lived what looked like a “normal” life.

Then my dad got sick with cancer. My family required me to come home to take care of him. It was an extremely messy situation that ended with his death (I am leaving out a tremendous amount of trauma that came with this experience).

While he was dying, voices started showing up again.

About 2 weeks after his death when I returned home, I started experiencing PTSD symptoms. Within weeks of that starting, I went to see a therapist to try to prevent myself from getting really sick again. The therapist had no idea I had DID as it wasn’t something I told people, as I certainly didn’t want to ruin the successful and public career I had at the time.

The therapist was a grief specialist, and was actually really good. Since she didn’t know about my trauma background, she didn’t know that her sitting down beside me on a couch in a therapy session would send me into a mute dissociative state.

It was the first time something like this had happened in over a decade. And the therapist recognized it as something significant, and would only work with me if I went to see a DID specialist and got cleared to see her. I reluctantly agreed, having a sense it was a bad idea for me.

Sure enough, I went to see the therapist in early 2015, and my system of parts exploded open with more parts than I even had before. I struggled mightily to hold onto my life and my career.

By 2017, I wasn’t able to work, and was in and out of hospitals with rageful suicidal ideation, debilitating amnesia, depression, anxiety attacks, and off the charts PTSD. My life was splintered into a zillion pieces again.

Now, it is 2019, and I have been working hard the past 3 years with a therapist who understands severe trauma. I am fortunate to have a therapist who takes clients that other therapists throw away.

I am coming to terms with the abuse I endured. I have just barely made it a full year without being in the hospital. I am still suicidal off and on rather frequently, but manage to get through these times a little better. Working on accepting my truth causes a lot of switching between parts on a daily basis, which in turn means I can’t remember easy things that I should remember.

My brain feels like a jumbled mess just about every day. It is frustrating. I accept my diagnosis and don’t hate or even dislike my parts. I accept my childhood abuse as true, but still, I am mentally incapacitated with amnesia and confusion.

I have come to wonder whether healing is actually possible. Maybe it is for some folks, but not for me? I don’t say that in a derogatory way, but maybe the truth is my mind is just too damaged?

These are the questions I am facing these days. It saddens me to think I might not be able to recover my mind the way it was intended to work.

The wreckage from my childhood may be a permanent part of my life. It doesn’t seem fair, but I for one should know life is not fair. 😔

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.

Barely noticing I have been missing in action

I have been MIA from the blog and other areas of my life lately. As typical for me, I have to really think where have I been.

I think maybe I have not been present as much as other parts of me who have other interests and have been using most of our time. Sometimes I barely realize when this is happening.

I have had moments where I have thought I need to write a blog entry, but then I vanish before I am able to do that task. Since I am not as present lately, it leaves me kind of scattered to write a new post (like this one probably is).

I have also been solo parenting for the past two weeks and it has been unusually difficult. School was out because of winter weather, my kids have both been sick at different times,, and I have been dealing with some difficult and new material in therapy.

I made it to the finish line as my spouse is now back, thank God. I only almost had two nervous breakdowns as we were into the second week.

Parenting is not usually this difficult for me, so I was frustrated to feel this way while the spouse was gone. Oh well, the kids are alive, fed, and made it to school when they weren’t sick.

The spouse was only mildly irritated with me for the chaos in the house because of the way I do things when I am in charge.

I had a therapy session a couple of days ago that was unusual in that I kept Rolodex switching throughout the appointment. By the end, I was frustrated because the time evaporated quickly, and it felt like a very chaotic and unproductive session. I kept “waking up” during the session and said to myself inside “why am I talking about this topic?” It wasn’t until later that I realized that was happening because I kept switching between parts.

I suppose this was the rebound of doing the very difficult session prior to that.

Sometimes we need a break, and just can’t be all things to everyone. Hopefully, the distraction of other parts doing their things will enable us to eventually get grounded again and feel more present and less scattered.

Thank you to those who checked in on me. I am doing ok, and working on getting back to my normal.

I hope to have something more interesting to write about next time!