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

Neurofeedback

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.

neurofeedback_1

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.

musclebrain

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

IMG_2974

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.