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.

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Losing the vulnerable parts of me during the pandemic

During the COVID pandemic, I have been operating in “fight mode” these past 14 months. My extreme survival instincts kicked in without having to give it much, if any, thought. I remember telling my therapist “I” (meaning my DID system) was built for times like this.

Those early weeks of the pandemic, I remember sitting for hours watching the news and the circus of people who were supposed to lead us out of this mess I had never seen before in my lifetime. At some point it clicked. Things were really bad, and if I wanted to live, and keep my family alive, I had to hunker down into survival mode and follow the rules even as they changed and didn’t make sense on a daily basis.

I had to shed lots and lots of parts of me. I couldn’t afford to be vulnerable, soft, rebellious or childlike. I needed the strongest, toughest, smartest parts of myself to be here. The others would have to go.

I did not consciously choose to rid myself of the vulnerable parts of me, the parts of me that might get in the way of our survival. I experienced what I typically experience, as if a higher being inside me had made some choice to reorganize the system without my input. I just rolled with it as usual.

I had moments where my hidden parts were quietly active as the pandemic wore on. Still, their expression within me was very limited because I could not risk dying, and in “fight mode,” I needed only the best fighters.

Typically with dissociative identity disorder (DID), there is a lot of noise in your head. For me, that noise is different parts commenting on things going on in our life. Opinions, name calling, crying, planning, negotiating and more goes on all the time. So, I have learned to live with “noise.”

With all that noise, the benefit is I know what is going on with the parts of my system. I know when someone is upset, happy, or creating a problem within the system. This is critical information to have if I want to have some semblance of a life in the world.

So, with all the silence over the past 14 months, I don’t know the answers to questions about other parts of me. I have no idea how or what they are doing.

Probably more importantly, I have become phobic again to interact with the other parts. It’s a real thing, not wanting to talk to other parts, not wanting to know the answers to important questions, not wanting to experience them and their pain and other unpleasant feelings/memories they bring to the table.

Without acknowledging your parts, you can pretend like you don’t have a trauma background. You can try to pass as “normal,” but truthfully, if anyone looked closely, they would see you have an extremely limited range of emotions and history (hello DID amnesia). Fortunately, most people are so self-absorbed, they don’t even notice.

The parts hold the deepest shame possible for someone like me who has experienced horrendous abuse. Unimaginable things, things you wouldn’t even believe, they hold for me so I can function.

Don’t get me wrong, I know a lot of what has happened to me in my past. But my parts allow me to stay detached from it. I have gotten close to them and felt their pain, and it is awful, and no one in their right mind would want to absorb that. I fear absorbing it and it truly becoming part of me, which keeps me stuck in recovery.

I started having something happen to me during the pandemic, and I really wasn’t sure what it was. It started with me waking up at the same time every early morning, making the loudest, panicked, god-awful sound that was kind of like gasping for breath while drowning. As I would get my bearings, my mind would immediately turn to self-harm and suicide because my body and mind feels so bad, and for whatever reason, those thoughts take it away. Except it started happening earlier and earlier during the night, and I can never go back to sleep after that cortisol surge.

I have been living these past few weeks on 3 hours of sleep. I didn’t tell anyone because I can still function fine with that much sleep. But what I didn’t count on was the toll it was taking on my system. It enabled a little part of me to come forward.

On que, a young part of me came out and had a lot to say about what was happening to us at night. I don’t know where she came from with so much to say. I never do.

I have been struggling a lot this past week. Lots of dissociation, memory loss (switching), suicidality, thoughts of self-harm, detached from everyone in my life, feeling depressed, and generally disconnected from the world.

Today, I was quite shocked to hear my little one reveal new memories in my head. She did not really speak of them, but I could see and feel them. I was horrified as I thought I was done with new memories. I don’t want anymore bad feelings. I don’t want new knowledge of trauma that I will have to come to accept whether I want to or not.

But, there she was. Seemingly out of nowhere. Telling the story of what is happening to us at night. She had so many answers, and I didn’t ask her for them, but she gave them to me anyway.

I worry because we are living in a different world. A world where therapists aren’t as accessible to me as they were before the pandemic. I had safe people and places to get the support I needed. I clearly don’t have that kind of help now as therapists seem to be the last to crawl out of the pandemic “hole of fear” despite getting their first responder vaccinations.

I worry for the little girl and others who share this memory. I worry for myself and what this new memory is going to mean to me. Will it change my history once again? I have a fear this new memory involves someone specific, and I don’t want it to, but it is pushing up against my consciousness.

I worry about the level of dissociation I am experiencing. I worry that I am doing things and not understanding what I am doing. I seem to be returning to an old, familiar, but troublesome way of living with my DID.

Yet, there is not much to do with that worry except to get lost in the dissociation that will make me forget I am worried. What choice do I have?

How the pandemic has caused my therapist to re-traumatize me

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I feel like a broken record that no one is listening to. I guess this is in line with why I rarely express my needs. The fear that my needs don’t matter, as was my daily life in my childhood. Ugh, that sounds victimy, and I hate sounding that way.

Let me be perfectly clear. I have multiple mental illnesses that significantly impact my daily functioning. 33 years ago I had my first Major Depressive episode. 32 years ago I was diagnosed with Dissociative Identity Disorder (then called Multiple Personality Disorder) and Post Traumatic Stress Disorder.

I have had periods of high functioning, and also periods requiring psychiatric hospitalization and heavy outpatient support during difficult times. I have successfully worked for periods of my adult life, and I have been on disability twice in my life.

My symptoms I currently struggle with the most are amnesia, confusion, no sense of time passing, thoughts of suicide and self-harm that seem to come out of nowhere, inability to feel most things, disorganized attachment that affects my ability to parent, chronic anxiety, and flashbacks that make it extremely difficult to function.

I have come to accept that I will have a life-long problem with mental illness that needs to be managed in different ways depending on how I am doing. I no longer believe the delusion that I will be cured if I only find the right therapist or do the right therapy. This is not me giving up, but instead gaining wisdom with age.

Patience is something we have all had to learn during the COVID pandemic if we wanted to survive. The world was turned upside down, and life as we knew it was gone overnight.

Unfortunately, those of us with mental illness still have our mental illnesses and need extra help surviving in this pandemic world that is actually quite triggering for many of us with trauma backgrounds.

I care deeply about my therapist, but she has kind of abandoned me during the pandemic. I have tried to be understanding and empathetic that she has her own fears going on through the pandemic. But then she got vaccinated as a first responder. Then I got sick and realized that medical providers all over town were showing up for work and seeing patients without any problems. And then my teenager’s therapist started seeing her clients in person.

I talked to my therapist in one of our not-very-useful phone sessions, and I pleaded with her to come up with a plan for what she was going to do to see clients who needed to be seen in person. I was honestly shocked that she didn’t have any sense of a plan, and seemed to want to just continue doing phone therapy with people, despite the fact that she was vaccinated and had returned to normal life in other areas of her life. She promised me she would come up with a plan. Two months later, nothing.

Over the phone, it is quite easy for my therapist to ignore when I am suicidal and need her help. It is easy for her to say it seems like I am doing better when I am actually having a horribly destabilizing day. She doesn’t have to see my emotions, my pain, fear, dissociation, and need for her help. She can just pretend that she is doing her job and everything is alright, despite those moments when I gain the courage and tell her I am not ok and need her help.

My therapist is retraumatizing me.

She is gaslighting me when she pretends like I am ok even when I tell her I am not. She literally doesn’t even acknowledge those rare times when I tell her I am suicidal or struggling with self-harm. She offers me nothing.

She has abandoned me. I definitely agree there was a time when it was right for her to isolate in fear of COVID, but that time is long past since she has been vaccinated, I have COVID antibodies and have been vaccinated (solely in hopes that I would be “good enough” for her to see me then). This rejection of me sets off a cascade of attachment craziness no matter how understanding I try to be.

I have come to the conclusion that either my therapist just won’t get help with facing her own fears about COVID, or she has realized that she can get away with doing this half-ass teletherapy so it makes her life easier (she often runs errands in her car during our telephone appointments, and she doesn’t have to actually sit with my pain).

My therapist, whom I love dearly, has become more like a close friend whom I pay so I can periodically confide some of my secrets over the phone. We aren’t doing therapy, and for a while, that was ok. But I have held on as long as I can.

It’s not clear where I should turn. My therapist may have abandoned me, but I struggle to abandon her (hello attachment issues). There are few therapists in my area who understand dissociative identity disorder. And because the pandemic has created its own mental health crisis, most therapists aren’t even accepting new clients because the demand is so high.

My first go-to is to decide to give up. To end this lifetime of struggle and suffering. Then I argue with my selves that I will not abandon my kids. My kids need me to help them get to adulthood.

So this leaves me in the familiar childhood quandary of there being no right answer. Nothing that is going to save or even help me. So I am on my own, spiraling downward when I shouldn’t be if I just had some help. This isn’t fair, but I know the very first lesson of my life was that I should not expect my life to be fair.

Therapists, we need you to be courageous

It is hard for my brain to push forward with my usual coherent thoughts. Each day during the pandemic, I just keep moving forward in crisis mode and it never seems to end. If I slow down, I get consumed by depression and lack of energy, so I have to keep moving to survive.

I shouldn’t feel sorry for myself because I know just about everyone is struggling with the way we must live during the pandemic. Maybe this is why it is hard for me to put my thoughts or even words together on paper.

I am so tired. Probably because I am surging in cortisol and burning out my adrenals. I also recognize every day is like Groundhog Day. Nothing really changes. It’s stressful as hell, but I know the stress keeps me moving, and to not move will allow feelings of depression and suicide to creep in.

I am mad at my therapist, but not really mad because I don’t even have the energy to experience or express that feeling too much. I also know she is struggling through this pandemic too, but my irrational child parts feel so abandoned.

It is a fight not to quit therapy again. I don’t have the money to have wasted sessions with her, but I continue to do so because I am scared not to. I hate that she will only do phone sessions with me. I am also triggered by her feelings that I might be contaminated with COVID, although she has never directly said so. Still, it brings up childhood feelings that there is something bad about me.

Of course the big one is that I don’t matter enough to her when the chips are down and she needs to prioritize her own health. My adult brain understands what she is doing, but my child selves feel painfully abandoned.

Having DID and not being able to get in-person support is so hurtful. It’s as if the therapy world suddenly decided we are all doing much better than many of us are (I am happy for those of you who are doing well). Suddenly, our survival is not as important, perhaps we are just collateral damage to this pandemic.

Don’t get me wrong, I have a healthy fear of the coronavirus. It is not something to play with, but I also feel like I have learned how to function safely in the world with my mask, hand sanitizer, and social distancing.

This brings up the “if my therapist really cared about me, she would see me in person.”

I am struggling. Struggling with just about everything. So conflicted inside about whether I should just quit therapy or that is the dumbest idea in the world.

I hate that I can’t get the support I need. I hate that my therapist is so caught up in this stupid pandemic that I barely matter to her.

I know I have returned to trauma time almost 24/7. I can’t make decisions which is usually a pretty good indicator I am frozen in trauma time.

I just love how everyone pretends like those of us with DID and are in need of support don’t really exist anymore.

I guess it is our own fault for not screaming loud enough, or maybe it’s just because the whole world is fighting us for scream time.

Let’s stop pretending that those of us with serious mental illnesses are doing ok, and that the fact that our therapists have abandoned us is going just fine. I do understand their desire for self-preservation, but enough is enough.

Psychotherapy can be done safely with masks, social distance, and hand sanitizer. The restaurants and stores are making it work. It’s time for the therapists to get off their home couches and their teletherapy.

Some of us are dying out here for reasons outside the Coronavirus. Staying at home indefinitely hiding from the coronavirus is not the answer for anyone. The mental and physical cost is severe.

Therapists, it is time to start doing your job again, and not just for the people who get enough out of teletherapy.

It can be done safely. Be creative. Let go of your irrational fear that we can’t meet in person with appropriate safety measures to protect us all. Heck, have therapy outside if you need to, but stop ignoring those of us who don’t find help with teletherapy.

Model strength, creativity, and courage. We need you to do that as much as you need it for yourself.

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?

The Benefits of Neurofeedback for the Traumatized Brain

Let me begin by saying I am a huge believer in the amazing benefits of neurofeedback for everyone. In fact, if you were around me daily, you would probably hear me griping about why neurofeedback is not done in every doctor and therapist office in the country, and the madness of insurance companies not wanting to pay for this very effective tool for so many ailments.

I was first introduced to neurofeedback this past Summer when I had gone to an “integrative” treatment center for trauma. As someone who was becoming more and more frustrated by the short-comings of talk-therapy alone, I was looking for something that would address the entire mind-body-spirit of my being.

I have experienced severe childhood abuse, which resulted in a lifetime of wrestling with Dissociative Identity Disorder (DID), Post Traumatic Stress Disorder (PTSD), Depression, and Anxiety.

Many of us would like to believe that once we escaped the childhood abuse, we are free to live a happy life. What most people don’t speak about is the lifelong affects severe childhood abuse has on a person’s brain and physical health, which contributes to the lifetime of struggling with various forms of mental illness as a result.

I have been in treatment for my severe trauma on-and-off for 28 years. I think during that period most people in the field of treating trauma would agree with me that they haven’t always known what they are doing with treating trauma.

Today, so much more research has been done to show more effective ways of treating trauma. For instance, EMDR has solid research behind it as a very effective tool to help many trauma survivors process their trauma faster, which means many people are not stuck with the aftereffects of trauma for their entire life. This is huge, but not always told or offered to trauma survivors. Though, to be fair, trauma survivors are more likely to stumble across EMDR than they are neurofeedback.

If you read a lot about trauma, or are in the field, you should be aware of the cutting-edge trauma experts like Bessel van der Kolk, Peter Levine, Dan Siegel, Pat Ogden, and Stephen Porges. There are a lot of other so-called experts out there, but most of them are what I would term “old school,” as they have not embraced the significant importance of addressing the mind-body-spirit when attempting to help people with trauma. They are sticking mainly to talk-therapy only as an approach, and this is a horrible disservice to those who have been traumatized.

I live on the East Coast, and found myself not making any progress with the swamp of trauma symptoms I was stuck in while I was doing extensive talk therapy only. I decided after doing a lot of research to head to California to get help with my trauma symptoms that were so severe I wasn’t able to function in my life. I was desperate as I had been in bed for 17 months, and generally not participating in my life,

After arriving in California, I quickly had an entirely new vocabulary for trauma treatments, and I was open to just about everything. I am tempted to go into all the different therapies here, but I want to stay focused on the neurofeedback. Neurofeedback therapy for trauma survivors was a given for every therapist and good trauma treatment center I looked at on the West Coast.

Ideally, when you begin neurofeedback, you want to get a QEEG or “brain map,” which is a snapshot of your brain and how it functions over a fairly short period of time (for me, it was 40 minutes under different scenarios). This brain map is so valuable because it can be compared to what a normal functioning brain looks like, and it can also be used to show that during the brain mapping period, your brain might look similar to someone who has anxiety, ADHD, PTSD, pain, depression, etc.

In my case, my brain map looked worse than even I expected, so it was a little overwhelming to sit with the results. I had done a brain map of my son who has some attention and sensory issues, so I had an idea what it was supposed to look like.  In layman’s terms. my brain showed a shit-storm of color in areas that should have shown up white, and my brain waves were extremely erratic and all over the place outside the normal range. For someone with complex-PTSD, this validates the daily symptoms we experience.

I learned a very important word called neuroplasticity, which refers to the brain’s ability to reorganize and heal itself by forming new neural pathways. This concept is so, so important to think about when looking at healing trauma.

Once my rational brain came back online, I knew I could repair much, if not all, of what was wrong with my brain through neurofeedback.

Through only 15 sessions of neurofeedback, I came out of it with some extremely important results as a trauma survivor. I don’t know how else to put it, but my mind was stronger. I was no longer depressed. I had less anxiety and an easier time going to sleep. Most importantly to my overall healing from trauma, the 15 sessions put me in a place where I could regulate my emotions better, which means I could tolerate talking about the most difficult parts of my trauma, which is something I was not able to do prior to the neurofeedback.

The inability to tolerate difficult or overwhelming emotions is probably the single biggest reason why trauma survivors stay stuck in talk therapy and don’t make the progress they need to move on with their lives. Yet, my experience in the old-school trauma circles that dominate the trauma industry is that there is almost no mention or even knowledge about the benefits of neurofeedback for trauma survivors.

If I look today at all the mainstream trauma treatment centers in the U.S., there is no place that is currently utilizing neurofeedback despite the extensive research that supports its usage. The only places that seem to offer it are the places where your insurance will not pay, and you are expected to pay out-of-pocket $40-50k per month for treatment. That’s the only way to get intensive cutting age trauma treatment at this moment.

The good news is that you can find neurofeedback offered on its own in some outpatient settings. I live in a major city, and there are probably about 14 options listed on a Google search for people to pursue neurofeedback. Typically, if you have severe trauma, you can expect to do 30-40 sessions for the neurofeedback to stick for the rest of your life.

When I returned to my home city on the East Coast, I found an excellent neurofeedback provider, and I am really looking forward to updating you on the continued results I experience to lessen my symptoms and to help my brain function the way it is intended.

My hope is that you take away from this that neurofeedback works for many, many problems people struggle with. Besides the symptoms of trauma, it has been shown to help people with ADHD, Autism, Insomnia, headaches, Anxiety, Depression, and overall improved brain performance, which is why you will hear of Olympic athletes who use neurofeedback to enhance their performance.

Neurofeedback is not new and whacky, There is lots of science to support it. Don’t expect your doctor or therapist to recommend it, because that is not likely to happen. But, if you are feeling stuck or want to get better quicker, it is a no-brainer to take advantage of neurofeedback to help heal your brain.

And if you think your brain is just fine as a trauma survivor, let me mention when I took the brain QEEG, I was feeling relaxed and nothing was bothering me too much. But, what showed up on the QEEG was a huge amount of anxiety that I am so used to experiencing everyday that it did not seem like a big deal and was unnoticed by me. This unnoticed anxiety I am used to living with has already caused me some serious health consequences.

The bottom line, if you have the means to do so, look into neurofeedback and give it a try. It is easy to do, and the results can be life-changing. I don’t know anyone who wouldn’t benefit from a stronger functioning brain, even if you think you have no issues. If you have a severe trauma background, do it. It will save you years of talk therapy time and money, and will give you a better quality of life.

 

 

Today’s Treatment for Dissociative Identity Disorder and Sierra Tucson

For the longest time, I have bought into “talk therapy” as the solution for helping me heal my DID. Don’t get me wrong, I think there is great value in talk therapy with a therapist who understands DID.

The highly respected Bessel Van Der Kolk, MD, has done significant research on the best way to heal trauma is to work with the mind, body, and spirit. I didn’t fully understand what he meant until I had access to these therapies myself.

I have found that the traditional treatment centers for trauma/DID are giving lip service to his research by adding yoga or “movement therapy” to their programs, and the rest being individual or group therapies only.

In my opinion only, the traditional treatment centers for trauma are backed largely by the members of the International Society for the Study of Trauma and Dissociation (ISSTD). ISSTD is the most influential organization when it comes to teaching practitioners about trauma treatment, and its members are doing what little research exists about Dissociation. I applaud them for this.

As a person suffering from DID and complex ptsd, I’ll be the first to tell you my brain does not operate like a non-traumatized brain. The long-lasting problems of trauma are with the brain, not the emotions so much. My brain did not develop correctly as I grew up, and so my brain stays in this constant state of fight/flight/freeze, which has caused me numerous health and psychiatric problems. Consequently, it has robbed me of living a functional life.

I don’t like to think of myself as a slow learner, but on this very important point I have been. I listened to the ISSTD and their current three phase treatment protocol, and subsequently have been depressed and hopeless about my lack of progress despite my very committed efforts.

I am going to sound like a Republican here, which I am not, but I believe a handful of the private trauma programs run by corporations are doing a better job at treating trauma than the ISSTD traditional model.

Why? Because they are focused on the research done by Bessel Van Der Kolk, Peter Levine and others who get that the way to healing is through the mind/body/spirit, and have aimed their treatments in this direction.

I do not understand for the life of me why the ISSTD is not strongly supporting a treatment model that the mind/body/spirit approach addresses.

What I hear over and over from ISSTD trained therapists (and I am thrilled they are trained) is that they believe having a positive long-term relationship with the therapist is the solution. And don’t get me wrong, I do think it is an important part of the solution, but I believe this long-term talk-therapy only approach is doing great harm to the DID and complex trauma community.

Too many people either lose hope and give up on this treatment, or spend a big part of their lives doing only long-term talk therapy and only getting a little better and suffering through life. I have been suffering through much of my life despite access to good therapists and being highly motivated.

Recently, I had the accidental experience of going to the private psychiatric hospital Sierra Tucson. I wanted to go because their program is completely different than ones I had been to in the past, and they have a focus on the mind/body/spirit as the solution for trauma and the co-occurring problems that go with it.

I feel I must mention this about Sierra Tucson before I go further. As an institution, they are terrified of DID and don’t really want to treat it because they are afraid a person with DID will commit suicide while in their program. They had a series of suicides a few years back that got them into a lot of trouble, and as a result, they are skittish (this is what an admission’s person there told me). Of course, none of the suicides were from someone with DID, but the industry-wide fear and discrimination against those with DID persists.

I also should let you know that me, my spouse, and therapist had to beg them to let me come to their program. After two days, they finally agreed to admit me on provisional status.

That said, I want to talk about my experience there. Once I was admitted, I experienced that about 95% of the staff who worked with residents to be extremely caring and kind professionals. As someone who grew up not being cared for at all, and never receiving this level of care in any other treatment setting, this instantly created a huge change in my brain and how I perceived the world.

Once I started the program, I began individual therapy with a primary therapist, small group therapy with the primary therapist (where we were allowed to talk about our trauma), management of my treatment by competent psychiatrists, talk therapy with a somatic experience therapist, lots of good groups with a couple of exceptions, DBT therapy, family therapy, and the option to work on spirituality if you wanted to (though I would argue the entire experience is a spiritual experience for those that allow it to be).

I also got to experience what they refer to as Integrated Therapies. I went there in a lot of neck and back pain, so I got to meet with a pain doctor who got me off the opioid drug I was taking, and replaced it with supplements and a nonaddictive muscle relaxer. He set up for me to have regular physical therapy, chiropractic, massage therapy, and personal training to recondition my very unhealthy body.

Other Integrated therapies I experienced were acupuncture (which one time reduced my ptsd symptoms by 50%), Somatic Emotional Release body work, Shiatsu massage, Equine Therapy, Ropes Course,  EMDR therapy, Bio-Neuro Feedback, nutritional consultations (where they discovered I was pre-diabetic), yoga, Tai-Chi, DNA testing to determine the best medications that will work for my body, and psychological testing where the psychologist actually meets with you to go over the results (there were no surprises in my diagnoses).

Every person I worked with was on the same page and like a therapist to me. I got some of my best therapy from my physical therapist. The woman who styled my hair gave me an hour of solid self-esteem boosting therapy. The massage and acupuncturists all gave good therapy besides just their normal tasks. The chiropractor was fantastic and showed she cared about me. The techs who are in charge of knowing where you are were some of the kindest people I met. They were all so sincere with the love and care they gave me, which was such a healing mechanism in itself.

I can’t lie and say everything at Sierra Tucson is perfect, but their treatment modalities and culture of caring for patients is superb, and that makes me say you may want to consider it if other therapies for trauma haven’t worked for you in the past.

In my opinion, Sierra Tucson runs into problems because it is a corporation that clearly puts profit over client welfare. But, interestingly, as a business, they don’t realize what a gold mine they are sitting on for Trauma and Pain treatment, which are definitely their strong suits. They focus on advertising what a great substance abuse program they are, and in my opinion their substance abuse program today is only average, and I would definitely go somewhere less expensive if that was my issue.

Unfortunately, in my case, my primary therapist was depressed and dealing with her own trauma, and this greatly impacted what happened to me at their program. I had an opportunity to change because they were moving her to a less stressful group, and I made the critical mistake to stay with her and my group until I gave my trauma history.

My primary therapist dropped the ball on me from start to finish while I was there, and I believe this ultimately led me to getting administratively discharged in the middle of my program stay. I don’t want to beat up on her because she is a nice, well-intentioned therapist who in my opinion was working while impaired.

My Primary Therapist never asked me about my trauma history, so she had no idea how extensive it is. She gave me the assignment to give my Trauma History to the group, which at first I thought was a bad idea, and then I was feeling strong enough to do it without emotion.

I gave my extensive trauma history (only about 60% of what I know) to my group as she asked, and the next day she came to get me and said she was “worried about me.” At some point she asked me if I thought I had alters coming out trying to sabotage my treatment or wanted to leave against medical advice. This was 100% false as I am fortunate to have co-consciousness with my parts, and all my parts were quite happy about our experience there. I was never suicidal or wanted to self-harm while there. But the truth didn’t seem to matter as people who never even met me made the decision based on her statements.

After arriving back home, I am devastated that I don’t have the money or access to get the therapy I need. Needless to say, my depression and functioning is not good.

But, one very important thing I must say. My brain changed while there. I feel different. Not entirely by any means, but my brain feels a smidge healthier, and I have not had suicidal thoughts since I went there. And I don’t know how, but a traumatic event that happened to me over a year ago no longer has the emotional charge it had before I went. I can now think about it and not feel suicidal.

I can’t explain this change in my brain in words, but it was like I could feel what a normal, calm brain felt like. It is definitely different and not something I could ignore.

There really is an answer out there for my damaged brain to recover and leave the suffering behind. It is hard for me to believe, but also extremely upsetting because they put me out for no reason, and I can’t afford a comparable treatment program at this time.

In the long run, I am sure it would be cheaper for my insurance company to pay a reasonable amount to a comparable program, but I don’t think they think that way. I am going to try, so I hope those of you who pray will pray for me, and those of you who send positive energy, will send it my way.

Healing is possible…..

Just a Normal Childhood

To be honest, as I sit here thinking about my childhood, I can’t think of a single happy moment that didn’t also involve some kind of abuse or neglect. However, had you asked me about my childhood when I was growing up, I would have said it was a fairly normal childhood.

I think the attachment issues I have kept me from connecting to other kids enough to realize what went on in our family and community circle was not normal. I didn’t connect the dots.

To be fair, there are some photographs that I don’t remember that make it look like a few happy moments, but unfortunately those memories are not stored in my memory bank, and I am guessing someone else inside my mind holds those memories, if they were indeed happy or normal. For me, they are just snapshot memories with no stories to go with them.

When I think back on my childhood like this, I think it is impossible I do not have better memories. If my life was truly so trauma filled, how or why did I survive?

The “trauma experts” will tell you that I used this ingenious way to survive by creating alternate personalities/identities to handle trauma and other parts of my life, which resulted in me developing Dissociative Identity Disorder.

However, since there was no textbook, no discussion with anyone about what this looks like, and no promise that my life would be better off by surviving, I question whether it was ingenious or even good. Please note that this is only my opinion. The majority of the world disagrees with me, and hopefully they are right.

Being a child developing DID to deal with horrific abuse in your life seems like a good thing to do. I believe most humans are have programmed in our DNA to survive, so this is my only explanation for why it happened to me. And I say “happened to me” because I did not plan or intend for it myself. I am just one of the “lucky” ones who survived.

Here’s the thing the cheerleaders (the ones who think it is ingenious) of DID tend to leave out: if you have a moderate to severe case of DID (it is on a spectrum), your adult life can be a living hell that you may or may not get some level of recovery from.

In 2017, we have “DID experts” who will say you can be completely cured (meaning your personalities integrated into one), and others who will work with their clients to improve their quality of life as the goal, and don’t believe integration is possible. I don’t know who is right or wrong in this opinion, but I do also know there are so many factors that play into how an adult who gets adequate treatment fares in their adult life that no one can say for certain what the outcome will be. And adequate treatment is extremely hard to come by.

I call this blog “Mistaken Survival” because my life as an adult with what some would call a “complicated” or “severe case” of DID has been it’s own version of hell. Had I known this would be my life, I am not sure I would have picked survival at this cost if I was given the choice. Of course, no one asked me to begin with, so I suppose it is a moot point. And, I do try to keep in mind my life is not over with yet, so to be like a human, I do try to hold onto some hope.

My clock is ticking. I have some wonderful people who are trying to help me. I want so badly for a better life, mainly because I have children I would like to see grow up into healthy adults. I am also curious to know what it is like to be happy. I have never known happiness the way most people do. That would be cool.

I also don’t want to leave this world worse off for people with DID who get treated so poorly. Education, resources, and compassion are just a few of the needs not currently available to those with DID. We are the secret mental illness, and the reasons for that secrecy are wide and will be discussed in other blog posts. But, those of us with DID are the victims of horrific abuse. Stop treating us like monsters or circus acts, or portraying us as the villains in movies.

I may not be able to save myself with my ticking clock, but I do hope to help others who come behind me. I hope I can convince you to join the ride.