Abused again: Trying not to give up on myself

I woke today with a busy schedule ahead of me. I have been dealing with a lot lately, particularly a very chronically sick child. It was also the day I was going to slip in taking care of myself by getting an x-ray of my hip that I injured 2 months ago and have been dealing with chronic pain ever since.

I wasn’t seeing my normal orthopedic doctor because I needed to get in quickly as I don’t have many self care openings in my schedule these days. In retrospect, I should have caught the red flag of this particular doctor having multiple openings for a next day appointment at one of the top orthopedic practices in town.

Nope. I jumped out of bed to get to the appointment early in the hopes they would take me early so I wouldn’t miss my therapy appointment afterward.

Of course, I sat in the waiting room past my appointment time before the front desk even called me up to fill out additional paperwork. So much for arriving 20 minutes early.

You know those doctors always have more important schedules than the people, so let’s make sure that is reinforced.

As I am finally walking back to meet the doctor, who incidentally wasn’t seeing any patients but me, I noticed in the paperwork they handed me to give the doctor that it has all the prescriptions listed that I have filled at my local drug store. On it, a long list of many types of psychiatric medications.

Great. I am going to get labeled a psych patient and treated poorly, as I have been through that scenario more than a few times.

The doctor pops in and spends 95% of the appointment time talking about himself, his health, the death of his brother, his age, how he doesn’t suntan anymore, what he watched on tv last night, his experience with his last colonoscopy, the cost of medications he takes, and how he treats his his rosacea.

I am feeling really grounded, but taken aback by this strange doctor showing no interest in me, and the clock ticking in my head for my next appointment.

I do my best several times to bring up the pain I am feeling on my side.

Finally, the doctor comes toward me to examine me. He starts touching me and says over and over as he moves his hands around my body “does this hurt?” When he found where it hurt he pushed in really hard and I almost jumped off the table. He says he knew that was where the pain was coming from. It was high up on my left side.

I continue to feel grounded but focused on trying to accurately answer this man’s questions about my pain as he touches me. I am so focused on trying to accurately answer him I don’t realize he is now touching me in my vaginal area and talking about bones in the pelvic area—that have nothing to do with why I am there.

I hear a couple of voices in my head calling me stupid because I don’t realize this man is touching my vaginal area for no reason and talking about how my pelvis bones touch each other.

In a slowed reaction, I realize the voices are right and this man is touching me inappropriately. And I do nothing about it.

I freeze.

I don’t stop him or tell him to stop.

It’s as if it is not happening to me, but I can hear this man’s words and feel his touch that it is happening.

Fortunately, the man seemed spooked for some reason and jumped up to go get an anatomical dummy to show me the bones in the pelvic area, which again had nothing to do with why I was there.

I couldn’t hear him so well any more as my internal world was starting to come undone.

I knew I had to get to my car before I acknowledged to myself what had just happened, so as soon as he asked me if I had any other issues I wanted to discuss, I said “nope” and raced out of there.

I tried my best to drive to my therapist’s office without coming completely undone. I made it there and then felt dead.

I let it happen again. My therapist probably doesn’t even believe me. How can these things keep happening to me?

I lost hours of time in my therapist’s parking lot as I switched between parts trying to process what had happened. I fought tooth and nail to not let other parts cut open my throat. The rage inside me is at its worst when this idea is present.

I am extremely angry at myself this happened to me today as I was just speaking about how this happened to me with another doctor some years ago, and I thought I had grown so it wouldn’t happen again.

My therapist asked me if I wanted to file a complaint. I didn’t. I know full well that my list of psych meds alone discredits anything I might have to say happened to me, which is probably why he targeted me to begin with.

I told 3 people today this happened to me. That is progress, but still I am awash in confusion how I keep letting this happen to me. Where are those strong parts of me when this happens?

Will it ever stop?

Doing my best to manage my C-PTSD and DID while navigating a sick child

My son has been diagnosed with a serious neurological disorder called PANS, which explains the symptoms we have been seeing in him for years. Please take a little bit of your time and watch the documentary “My Kid is Not Crazy” on Vemio to learn more about PANS.

I have found that his diagnosis and the related experiences I have had since then has kept me in a constant fight-or-flight mode that I can’t pull out of for longer than an hour, and this has been going on for weeks. I’m exhausted.

My own complex PTSD from my severe childhood abuse has been activated in more ways than I even comprehend at the moment. I just know I am functioning in a state of chaos and fight/flight.

My Dissociative Identity Disorder is not helping as I have accidentally injured myself these past couple of weeks because I am so distracted by the conversations happening in my head.

I have done my best to hold my DID in check, but as I am nearing exhaustion, it is getting more difficult. Arguments between parts. Large chunks of time missing. New parts surfacing who are under significant distress. Parts worried for us, worried for my son.

And then there is this need for me to save my son. Not uncommon for any parent facing this situation, but feeling really out of control due to my trauma background. I really cannot stop myself from constantly researching, talking to professionals, going to appointments, and talking to other parents who are in similar crisis.

The ironic thing is that parents of children with PANS/PANDAS typically develop PTSD as a result of going through this nightmare with our kids. This I recognize in my fellow PANS/PANDAS parents, and do my best to help.

I know I need to find the balance between taking care of myself and taking care of my son, but I feel so triggered by the entire situation I really feel unable to stop.

As a child no one made any attempt to help me, but by God I will do everything possible to help my son. This logic is driving my being.

The similarities between my trauma and this situation are endless, but my mind is not clear enough to really dive into that now.

Though I know I am doing so much good for my son by searching for answers, I also recognize as a parent this is the first time I have felt my diagnoses significantly impact my ability to maintain stability and feel solid as a parent. Though my kids don’t notice, I do, and it worries me as I can’t stop myself from fight/flight mode and all that entails.

Is my overwhelm just an excuse for laziness?

I am confused at the moment. I continue to struggle with who I am. I mean, I know who I am and what I believe usually, but the other pieces of my identity don’t always back me up.

My family really needs me to work so our children and the adults can get all their needs met. We are struggling financially, and not too long ago I was bringing home a good paycheck.

These days, I feel like I can’t work. I am working at getting through the days and taking care of my kids, making major changes to my health, and keeping myself emotionally stable.

The fact that I am functioning by getting out of bed and going out into the world, and actively taking care of my kids everyday is a miracle that didn’t exist 4 months ago.

Yet, there is increasing pressure from my spouse, myself, and our mounting debt to get myself back to work in my old job so I can bring home that money again.

At the same time, I still find myself getting overwhelmed by little things from my old life that were easy then.

Today, my major accomplishments were to make myself breakfast, pick up my son from camp, take him to a park for an hour, and check Facebook a few times. Those few things literally took up my whole day and felt like all I could do.

I hear inside my head “you are so weak. Quit complaining and stop being lazy and get back to work.”

I never considered myself a lazy person, but maybe I am. Maybe the overwhelm I constantly feel is just an excuse to get out of work.

I like giving my family money so we can live a good life. I just don’t know if I can put myself back into that position of doing what I do to make good money.

I am good at this work when all parts of me are working together, and anxiety doesn’t hang close by. Sometimes I miss it, so sometimes I secretly dip my toe in the water and feel overwhelmed like I can’t do it. Then I feel completely inadequate.

Who am I? Am I this smart, talented, strong woman who is a good provider for her family, or am I this pathetic, damaged, weak woman who gets overwhelmed when a door slams too loud?

I don’t know. It seems like this is my fate to be on a polar opposite pendulum depending on the moment.

One moment I am feeling healthy and strong with the health changes I am making in my life, the next I am falling down my stairs again and re-injuring myself, and feeling depressed about the state of my health and the hopelessness of not getting help or answers from the medical community.

I was thinking earlier today maybe the medical community is just writing me off because I am 50. I feel like I am 30 in spirit, so it is confusing to be thought of as old.

My life is frustrating and good. I am smart, but cognitively impaired sometimes. I am strong, but easily hurt. I feel really healthy, then chronic pain consumes me again. I am super stable, and then utterly disabled by the chaos in my brain.

The only thing I know for sure is that I am usually a really good mom.

Other than that, who am I?

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.

 

 

My Brain After Trauma

Gehirn - Schwingungen 3

Some days, I like to forget about my horrific abuse history and think I am just another ordinary person trying to get by in this world. After all, I can get distracted by the things in life the same way my presumably ordinary neighbors can.

I appreciate the moments when nobody knows my big secret about having Dissociative Identity Disorder (DID) and Complex Post Traumatic Stress Disorder (PTSD), and that people think I am just another neurotic person, similar to themselves. I am a master at hiding my symptoms.

Then there are the moments when the truth slaps me in the face so hard I can barely stand up again.

This week I met with a doctor to go over my results of some cognitive testing and my QEEG, or brain map. I am very interested in alternative or nontraditional therapies in treating my DID, so I am working with a new “Brain Doctor,” in addition to my traditional talk therapy.

I have always known I am sometimes cognitively impaired, and certainly sometimes operating from a “trauma brain.”

Though I had neurofeedback this past Summer for about 15 sessions, the providers I used never shared what was going on with my brain—they shared positive statements about the neurofeedback results they were seeing. Never the baseline.

In my discussion this past week with the new doctor, it was explained as sensitively as it could be, that I am extremely cognitively impaired and my brain waves look like a badass, not good, electrical storm.

I was told calmly and slowly they have seen worse, but it is pretty bad. The doctor is a genuinely good person and an optimist, and believes she can help repair much of my brain problems, even as severe as they are.

Because I had my son go through this process for a different reason, I knew what the brain pictures were supposed to look like. You want the brain to appear white on the paper.

I was completely overwhelmed by the amount of color on every one of my brain images.

I thought I was really calm during the actual test being done, but the results make it look like I am an anxious wreck. I guess my body has simply become used to the free-flowing anxiety from my PTSD, and I only recognize it when it is over the top.

I showed my brain in my best state. Can you imagine if I showed it when I am doing really poorly?

PTSDbrain

Two years ago, I was working in a highly demanding job in which I was quite successful and made a lot of money. Today, I am not working at all.

The one sentence from the doctor that stood out to me was when she gently said “I can see why you are not working, your executive functioning is extremely low.”

A dagger in my heart.

The scribble scrabble brain waves on the page were not something I can deny. I don’t need to be a doctor to know it isn’t normal looking at all.

The mental anguish I feel on a regular basis has just been verified as totally real, and it is as bad as it feels. It is not hidden or made up. Through this QEEG, I let people see the mess of a brain I have. Lots of internal conflict about doing so.

“You’re such an idiot, why did you let people see what it looks like inside.”

My trauma has without a doubt destroyed the way my brain is supposed to function. Maybe I shouldn’t say destroy because my favorite word is all the buzz these days—“neuroplasticity” (when the brain can heal itself), there is hope through neurofeedback and other brain therapies to repair much of the damage.

I always thought I wanted to see what my “DID brain” looked like. At this point, I am feeling it was a mistake, but hopefully some day I will change my mind about it.

It is an overwhelming picture of myself. And, I actually feel shame about my brain. That’s a new one.

This morning I was looking at a job announcement that came to my email, and what followed were the voices in my brain telling me I can’t possibly work given the extremely low level of executive functioning I am at (confirmed by these test results). Sigh.

I always knew the abusers from my past ruined my brain, but I secretly didn’t want it to be true. Parts of me appear to be so severely abused. I didn’t want to believe they could be as badly abused as they felt and claimed. I realize now how much I was clinging to the hope that not all of my story was true.

It is hard to hide from the serious consequences of the severe abuse I endured throughout my life. It is sad when the ability to deny the consequences is gone.

 

Pounding my PTSD head

Agonizing torture. This is what I experienced today in the name of medical care.

I had a special MRI today, one that would show more advanced pictures of my spine.

I have had MRIs before, and the closed ones are always difficult for me to make it all the way through. But, I manage, somehow.

Today’s MRI was different. They asked me if I had medication before I entered the room, in which I responded “no” because nobody had mentioned it to me.

I approached the room and for some reason it was set up in a hard-core scientific way that made it so no one could mistakenly enter. There were lights all around the door frame, and it was sealed in a let’s keep the zombies out kind of way.

My anxiety level went up.

I entered the room and took one look at the MRI machine and my anxiety went up more seeing it was a closed MRI that was actually closed longer that the last one I had been in with a struggle.

I could feel myself starting to come unglued inside, but fighting with myself that I needed to get this done.

I started dissociating, and laid down on the table, placing my neck in the head device. I was starting to feel a panic attack coming on, which is not something I typically experience.

The true horror of the situation came into being after I resolved to myself that I must do it and can do it. That’s when the technicians places a mask-head cage device over my head so I couldn’t move my head if I wanted to.

I could feel myself crying and panicking all in one. I am thinking to myself this is the worst thing that has happened to me since my horrific childhood abuse. I am thinking I should tell them I have PTSD.

But, I close my eyes and tell them to go ahead. All the while knowing how emotionally damaging this is to me.

The loud noises are crushing my mind and spirit until I am the living dead in this machine/torture chamber. I am so dissociated I can no longer move, think, talk, or do anything for myself. Severe collapse resulting from severe retraumatization.

My living dead status enabled me to make it to the end. I could not move at first as I wasn’t self aware enough to know what was happening. I couldn’t talk to the technicians afterward. They didn’t seem too concerned about my changed mental status.

I finally made it back to my car. Totally wrecked by the experience. Split into many pieces at once. Some believe they drilled into our head during the procedure. Fragmented all over the place.

New trauma. I let it happen for what I thought was the greater good. I think I should have stopped it when I saw that head cage.

My spirit can’t take this type of experience. But what was I to do?

9 hours later and my body and brain are still shaking and crying.

And this is modern medicine.

The Mysterious Force Field

Each day I deal with a force field of varying strengths that decides whether I get out of bed or not. Today it was particularly strong and it barely allowed me to get out to go to the bathroom.

It seems strange to me that my pack of insiders who control the strength of the force field on any given day pick the bed as our safe place. Growing up, my bed was often a place where sexual abuse occurred, so it wasn't very safe.

I have been trying to reason and make sense of this force field for 17 months to no avail.

When I explain it to others I think it must feel like what people experience when they become paralyzed. Their brain can try all it wants to tell the body to move, but nothing happens. I don't understand this disconnect in me.

The inside people responsible for not allowing the body to get out of bed do not let their issues be known so I can try to help, or get them help with it. So, I remain a prisoner.

Those of you who don't understand Dissociative Identity Disorder (DID) probably think I am not making a whole lot of sense, or just playing out some kind of depressive psychotic game.

The truth is that I live in a body that I don't always get to control, even when I am conscious and present in it. I have others in my body who also get a say in what happens with the body.

Meanwhile, my life is passing me by. My children are growing up without me, my life is not being lived, and my health is deteriorating. This is not what I want, and I have no idea how to change it.

I sound like a victim because I feel like a victim. Yes, we are all quite capable of victimizing ourselves. Abusers do a good job at leaving that skill behind along with the other damage to us.

I am trying everything I can think of to make this change. New therapies, new pills, new environment.

If I fail, there is a good chance I will lose my family and my health. I really want to succeed.

What it will take, I don't know.

Stay tuned to see the end of this story.

Understanding My Identity


I have been diagnosed and aware of my Dissociative Identity Disorder (DID) for 28 years now. That is the majority of my adult life. As a child, I knew things were off here and there, but didn’t quite understand what it was.

I was thinking today what is it like for me to have DID today, and my mind stays relatively quiet as I am working extra hard to hold things together during a stressful time.

My mind is often not quiet. I often hear someone or someones commenting on things going on in my life. I hear criticism or a mean remark coming from in my head as if it is my invisible friend talking to me.

I am well-trained to know that no one else can hear the talk in my head, so I do my best to hide it. It is something I learned to do as a child. At that time, I thought everyone experienced an inner dialogue from different voices. In the 1980s, I wrote it off as my inner children voices since that was all the rage back then.

When I was around 10, I got invited to a birthday party of a friend to see the new Star Wars movie (you know, the original one as it was released in the theaters). It was a big deal for all of us as kids didn’t regularly get to go to the movies back then, and this Star Wars movie was the first of its kind back then. To this day, I can remember playing in front of the theater, giddy with excitement to see this amazing movie. The next thing I remember was being outside the movie playing with the other kids as we re-enacted scenes from the movie. Except I had no memory of seeing the movie, but the message I knew in my head was to not tell anyone and pretend as if I did.

I wondered about Star Wars from time-to-time, but I never understood what happened to me that day. I was used to weird days, so I knew it was part of that weirdness that I didn’t understand, but knew to keep to myself.

I can remember one day I was hanging out in my parents’ bathroom when I was 11. I was having a conversation with other people in my head about whether other outside people could hear other people in their heads. I knew the answer was no, but decided to believe they could.

Fast forward to high school, when I experienced dramatically different interests and identities. I knew it was strange that I had such varied interest, social groups, and behaviors. I was all over the place with no consistent identity. Again, I knew something was wrong with the way my mind was working, but I needed to not think about that to survive, so I pushed that thinking away every time it came up in my mind. Occasionally, I would try to rationalize it as normal behavior, but I looked around at the other kids and learned rather quickly they didn’t have these different identities.

In college, the first time away from my biological family, I excelled at school, extracurricular activities, friendships, and even fell in love. Life was nearly perfect, yet I managed to have my first Major Depressive episode with suicidal ideation, and landed in a private psychiatric hospital for 6 months.

Super confusing to both my treatment providers and me, my successful outside identities crumbled into nothiness and could not function or get better. Every time things seemed to be getting better, I would suddenly get intensely suicidal and my providers would scratch their heads trying to understand what was happening with me.

They could not figure it out, but one day sitting quietly in a chair when things had gotten better for me again, I heard the voices in my head talking about killing themselves because our therapist was out of town.

I tried to talk with my doctor and therapist about these voices, but they dismissed it. But from that point on I started realizing more and more that I was not the only one occupying my body. I didn’t have a name for it yet, but I knew there was something going on with me that was my truth, but my mental health providers could not or would not accept.

When I was 22, I was working at a psychiatric hospital and I learned the name for what ailed me—it was called Multiple Personality Disorder (which is now called Dissociative Identity Disorder). I went to a psychologist who specialized in it to confirm my suspicions. She confirmed it, and life became very unruly as DID can be for some people, especially at the beginning of their diagnosis.

This is a secret I keep from almost everyone  I have known for 28 years. It can be lonely sometimes, but my upbringing taught me to tough it out so I could survive.

Why do I keep it a secret? Two reasons: Hollywood has made a mess of teaching the general public it is a scary, dangerous disorder that should be feared (just ask my last church minister as she told my spouse to leave me and take the kids when my spouse shared the diagnosis with her). The other reason is because people don’t want to believe that horrific child abuse and neglect happens at such a severe level in this world to create the thousands and thousands of us who have this disorder.

There is no other way to get DID unless you have been exposed to unbearable trauma that was so severe that your mind splits off to try to help you survive. People aren’t just born with it. There is ALWAYS a horrific story that goes with why they have DID.

Those of us with DID are some of the most abused victims in our world. Yet, we are rejected by the majority of our world and even the mental health system that is supposed to help us. I am not scary, but people are still scared of this diagnosis.

In the major city I live in, there are no treatment facilities to help those with DID, and even though it is considered a psychiatric condition in the DSM V, many mental health providers choose to ignore it and pretend as if it doesn’t exist. Yet it is much more common than most people realize.

We were raised to hide this disorder, so we sometimes refer to it as a disorder of secrecy. I am your neighbor, your friend, your professional, and your go-to for advice, and you have no idea that I carry this secret struggle with me everyday.  You also have no idea that I fear each day of being “found out” by the wrong people, and then further rejected by a world that has been so cruel to me.

Yes, I live in a body that is shared with many different people or parts, and it is a struggle to live this way. But, I am not to be feared. My people are lovely and hurt and deserve to be treated better by this world.

The Meadows Trauma Program—No to DID


From the Meadows website:

“For over 35 years, The Meadows trauma treatment program has been helping trauma victims heal and learn the skills necessary to cope with the devastating, and often hidden, effects of trauma. The trauma treatment program at The Meadows was specifically designed for trauma survivors by Pia Mellody and a team of world renowned experts including Dr. Peter Levine, John Bradshaw, Dr. Shelley Uram, Dr. Jerry Boriskin, Dr. Bessel van der Kolk and Dr. Claudia Black.”

The world-renowned Meadow’s trauma recovery program is only meant for people with certain levels of trauma. 

You can’t have too little, or you better be extremely wealthy ($60k) because your insurance program is not going to pay for it. You can’t have too much because then they feel you are too high of a risk for suicide or some other lawsuit.

I put up a good fight arguing that my DID diagnosis should not exclude me from the option of getting treatment at the Meadows. Unfortunately, it appears the Meadows is basing their decision off the Hollywood version of DID instead of examining whether a person might be appropriate for their program regardless of a DID diagnosis.

I find it very fascinating that these treatment centers are more comfortable with people who are actively suicidal than they are a stable person with DID who is not suicidal. My therapist likes to say that these places just don’t understand the diagnosis, and I am beginning to agree that they are getting their information from Hollywood instead of real life.

I am the first to say that not everyone with DID is in a place to do residential treatment, but there are also lots of people with DID who are in a place to do it and be safe. I consider myself the latter, so this has been a personal frustration for me.

I guess what really hurts me with the Meadows (I have been rejected by many other treatment centers based on my diagnosis) is that some very important people in the trauma field stick their name on the Meadows as consultants for their trauma program.

I just don’t see how these people in good conscience can sleep at night by turning away those of us who have been the most harmed by child abuse, meaning those of us with DID.

It is absurd how afraid people in the trauma mental health field are of those of us with DID.

I have made it my mission to try to educate and change the current lack of resources available to those of us with DID.

The clinical director at the Meadows agreed with me that there are not intensive treatment programs for those of us with DID, but only a handful of hospitals that are in place for stabilization.

I don’t need need stabilization. I need treatment. I deserve treatment. This is not my fault, and it is not ok that the founding members of the trauma movement are not working to provide more services for those of us with DID.

As much as Sheppard Pratt and University Behavioral Health are doing to take people in when they are unstable, those programs are not going to help anyone heal.

Those of us with DID deserve treatment programs where the very best and latest treatment modalities are available to support our recovery.

Recovery is possible, but not for most people who don’t have access to the latest treatments offered at these trauma treatment programs.

For the past year I have been having the hard conversations with those who reject us because of a stupid diagnosis. I do not accept that we don’t deserve help because our trauma was so severe that we developed DID.

In my opinion, don’t you dare call yourself a trauma therapist and then say you don’t treat DID, and equally, don’t consider yourself a world – renowned trauma treatment program if you won’t help those with DID.

If you have DID, please confront these people when you encounter them. We must assert our rights to get better, and let them know that we are severely injured human beings who deserve to be at the front of the line when it comes to getting help.

Then they can sleep at night knowing they are helping all of us who have suffered severe trauma.

Living or dying in the safety of my bed

For a little over 17 months I have stayed most of my days in the safety of my bed. I don’t know how this happened. It was not a conscious decision on my part, but it has served to protect me from a sometimes scary world and dangerous people.

I didn’t always think this way. I am guessing the calamity of traumatic and stressful events in my life led me here. My brain was no longer the brain I was used to.

I was like the newly paralyzed person telling my legs and body to move, and it would refuse. Or, I was bargaining with myself that I would get up and walk for 15 minutes tomorrow if I didn’t have to do it today. Those tomorrows never met their end of the deal.

This starring at the wall or into nothingness is going to kill me if I do not figure out how to live out of my bed.

My body is wasting away literally. I am out of breath with the slightest movement. My body hurts when it is used now.

I pray I can get my mental health and health back before my life is taken from me. I want to live and see my children grow up. I worry I have taken it too far this time, though I still don’t know how to get myself out of bed.

Hoping for answers and solutions soon.

Peace