Review of Sheppard Pratt’s Trauma Disorder Unit

In some ways, Sheppard Pratt resembles a college campus instead of the typical scary hospital.

Clearly, this is only one person’s experience with Sheppard Pratt’s TDU. Everyone is likely to have a different experience, but I think information is important, so I hope you find this helpful while also realizing it is only my point of view.

Admission Process

Perhaps the worst thing about Sheppard Pratt is its current admission process. I can start by saying the current person running their admission process is not exactly friendly or compassionate, and I’ll leave it that they can do much better.

The SP TDU admission process is designed to disempower clients as they have the unrealistic expectation that your private therapist is going to do all the work to get you admitted. In fact, they don’t want to speak with you at all and only want to speak to your therapist (in my case, this means dragging the admission referral process out as my therapist is short on time and administrative tasks are not her strong point). Even after the initial referral process was done, the admission coordinator requested my therapist get discharge summaries from past hospitalizations before they would approve me on their waiting list. More wait time as my therapist is too busy to chase paperwork from previous hospitalizations, and I wasn’t in the best of shape to assist her. Eventually we persisted.

Unfortunately, Sheppard Pratt will not hospitalize you if you do not have a referring therapist and psychiatrist. I am not sure where this leaves people who don’t have one for whatever reason.

My request for hospitalization at Sheppard Pratt was not to do work or get a diagnosis, I was in a severe suicidal crisis. Initially, we were told it would likely be a 1-2 week wait. After many phone calls from my therapist and me, we were told it would be another 1-2 weeks. Although the Admission Coordinator verbalized her understanding of how dire my situation was, she really didn’t seem to care.

At more than one point we asked if we could be admitted into their general psych unit and we were told “no” and that they would not tolerate us “gaming the system.” We were not clear as to this response as it says on their website that in emergencies, it is possible to be admitted to the general psych unit, but transfer to the trauma unit was not promised. We were ok with not being transferred as our safety was very poor and we simply wanted to go to a safe inpatient unit. Again, we were denied that option.

In the end, it took me 6 weeks to gain an emergency admission into Sheppard Pratt’s program. There was no priority given to those in crisis versus those coming in for diagnosis or to do some work. I was also told I had 24 hours to enter the hospital if I wanted the admission spot. This came with no pre-warning that an opening was coming up, but for fear of losing our place on the list we took the spot which took a lot of shuffling since I was coming from out of state. Surprisingly, when I arrived at the Trauma Unit, there were a few open rooms that remained open. Perhaps they don’t have enough staff to handle more?

The Program

I would say their program is highly individualized. They have groups and individual sessions. I was only allowed to attend the boring educational groups because the staff felt I was too unstable to hold it together for the deeper groups. I won’t get my feelings hurt about this since there were many of us not allowed to go to those groups.

The therapists they have there are often therapists who are training to be top trauma therapists. I’ll be honest, my therapist was shitty. Every session felt strained and awkward. I didn’t benefit from her at all. The upside to that was I didn’t have any transference with her, which is usually something difficult for me to manage.

My psychiatrist was someone I saw 5 days a week, and he was exceptional. We got off to a rocky start as he was triggering as hell, but fortunately, this doctor’s ego was intact enough that he was willing to change his behavior that was so triggering to me. A nice thing about the psychiatrist was that he actually did therapy with me instead of the typical medication management. I grew to have a strong appreciation for this man’s competency with DID.

The real heroes of this unit are the mental health workers from every shift. Sheppard Pratt really did something right when they decided to hire and train top notch people who could sit down and talk to you just about whenever you needed it. These sessions were key to the success of my treatment there. I’d go so far to say that these people had a higher skill level than the therapist I worked with.

While in the program, you can expect to learn a lot of skills to manage your DID. People take it quite seriously, so it was helpful.

The Unit

The nicest thing about the unit is that it feels completely safe, and has very little chaos going on.

The food was below average, but you can survive on it. Unfortunately, the TDU is not allowed to go to a cafeteria to pick out the food, so food can be disappointing, which caused more than a few freak outs amongst the patients. Keep in mind that the unit does allow you to keep a snack drawer where you can have things brought or sent to you. Most importantly, this space can hold sodas, well, at least when I was there.

Each person has their own bedroom, which is quite the luxury for a psychiatric hospital, but a real necessity for trauma patients.

The bathrooms are on the hall, and though you mostly have privacy, it is not uncommon for someone doing checks to knock on the door while you are in there to make sure you are ok.

There is a lot of unsafe behavior that has happened on this unit in the past, so they have very strict rules about what you can bring and not bring. This makes it hard to stay there for long. For me, not having access to a hair dryer was emotionally hard for me to deal with on a day-to-day basis as my hair is wild without it. Nothing I could do about it except avoid mirrors and dissociate my appearance.

It has been a year since I went into the program there, and I have actually stayed out for an entire year now, which has not been something I have been able to accomplish after leaving other treatment programs.

There is no doubt about it, I got help while I was there. It was hard being there for so long, but it turns out it was worth it in the end.

My opinion is this: I have experienced what is out there for people with DID over the past few years, and Sheppard Pratt is hands down the best available.

The main issue they need to resolve is helping people with DID who are in a suicidal crisis get into their general psych unit until a bed becomes open on the trauma unit. I know the hospital has such a good reputation that even the general psych unit doesn’t have empty beds. Still, Sheppard Pratt is in the position where they are mostly alone in helping people with DID around the world, which is a staggering responsibility. I hope they will look to figure out a way to create more bandwidth for their program to help more people.

I have to wonder how many people end their lives because they are unable to access help there. I know I almost didn’t make it.

If you have DID and can wait to get in, the program gets my highest recommendation. A strategy I suggest to everyone is to get on their waiting list if you are even thinking about going into the program. You can always say no-thank you when your number comes up.

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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 loneliness of my DID

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Your Pity Doesn’t Help

I like to write about my Dissociative Identity Disorder (DID) to educate people about the disorder, and because I selfishly hope it is somehow therapeutic for me to open up about the secret life I have lived my entire life. And I will forever be an advocate for those in need of help.

At times, in order for people to understand the origins of my DID, I have written about the horrific abuse I experienced in my childhood. It is unimaginable to most people, and frankly, sometimes overwhelming to them.

A common response I will get from people who have read about my history is pity. They feel so sorry for me, which is a hard pill for me to swallow. I don’t feel sorry for me. I feel angry and hurt and lost and sad.

I guess if I was still a child that pity might have meant something to me. Maybe.

I am a survivor now. I am way past needing anyone to feel sorry for me. Nothing can change my past. It is done.

As I sit here writing this I realize this kind of sounds rude, and I really don’t mean to. It’s just hard for me to hear someone have pity for me. It doesn’t help me.

I am fortunate to have survived a childhood that many children wouldn’t have. My DID allowed me to survive as a child. Now, as an adult, my DID threatens my survival from time-to-time, and definitely makes my life more difficult to say the least.

Still, I don’t want your pity.

I want your understanding of DID. I want you to be outraged how people with DID are treated in the world and by the mental health system. I want you to be aware of the severity of child abuse going on in this world, and likely even in your own neighborhood. I want you to save a child you suspect may be getting abused. And I want you to contribute to making the world a better place by helping people with DID get the resources they need to heal, or at least live.

I am fortunate to have many blessings in my life in spite of the DID. I have an amazing spouse and am blessed with two gorgeous children. I have had times when I have had really successful careers, and have felt good about the work I have contributed to this planet to make it better for others. I have a nice home, health insurance, cute dogs, and I live in a nice neighborhood with many loving people in my life.

If you read any of my other writings you will also know my life is not a bed of roses. But, I am making it through life anyway, and I am hell-bent on healing despite the odds and the naysayers.

For me, what matters most is the people behind me who aren’t as fortunate to have the resources and support I have. They are living in a daily hell, and they need all of our support, advocacy and love.

No one needs pity. When has pity ever helped anyone?

People who have been so severely traumatized as children their minds split apart so they could survive need so much more from you than pity.

Start with trying to understand, and follow with compassion. And hopefully the rest of my wish list for you will follow.

Understanding Dissociative Identity Disorder

I have Dissociative Identity Disorder (DID), which most people don’t seem to understand and are terrified of it. I guess I understand the not understanding part, as it is often hard for those of us who have it to understand ourselves sometimes.

I want to tell you about my experience to see if I can help bring any clarity to the understanding and fear of this disorder.

I grew up in an alcoholic and extremely abusive home. Sexual abuse, violence, religious abuse, and neglect were part of my everyday childhood. I am not going into detail here about the child abuse I endured because that is a whole other very big topic. I just need you to accept I endured a horrific childhood that wouldn’t be imaginable to most people, so I can stay focused on trying to explain the DID.

Growing up, I didn’t have a manual to read to tell me how to deal with the amount of trauma I experienced, but I was lucky enough to have a resilient brain to help me survive it.

As a child, I was often in overwhelming abusive situations that my brain just couldn’t process at that developmental point in my life. So, my brain ended up splitting off into what I call different “parts” or personalities to handle all the trauma and other things in life that I was expected to handle.

For instance, I had parts that would handle being sexually abused through the night, and other parts whose job it was to go to school the next day and pretend like everything was normal. I have parts that hold specific traumatic memories, and other parts who hold the feelings that go with those memories. I have parts who function just fine in the world, but will tell you they can do so because they did not experience the trauma themselves. For them, it is like it did not happen to them.

I have parts who have their own friends, and socialize very differently. The outside world that might notice this chock it up to mood swings, which I find very funny.

My parts are evolved enough to know they all share the same body, but my parts also each see themselves as a separate person living in this body. Most of them see themselves as much younger than the biological age of the body, which often creates a lot of confusion for all of us as the body is aging.

My parts are very different, some even have different names, ages, genders, sexual orientations, religions, vegetarians, meat eaters, happy, depressed, cognitively impaired, brilliant, social, agoraphobic, and on and on.

Most people don’t know how to look at me and understand that depending on which part is out, the essence of who I am shifts to that different person.

One moment I can be experiencing the world through the lens of a successful and bright 40 year old woman, and something may trigger me to shift to an 8 year old boy who is afraid of everything and has trouble navigating the world and trusting anyone.

A lot of people don’t believe it is possible for someone to truly be this way, but the truth is the brain is an amazing thing, and there are thousands and thousands of us on Facebook alone who all seem to have a similar way of living in the world like this as adults, yet we have never met each other in person to come up with some collaborative scheme to fake this for reasons that would only benefit those accused of child abuse.

My life is very challenging on a daily basis. Amnesia and psychiatric symptoms like anxiety, depression, suicidal ideation, self-harm, and PTSD are my biggest struggles. These symptoms are fairly common for those of us navigating DID.

I have had this diagnosis for 28 years and it has been confirmed by multiple experts (this fact seems to be important to people, so I put it in). In the 28 years of knowing about this diagnosis of DID, I have worked really hard to have some semblance of a life and to get better.

I have given up on getting better at times, and have just tried to learn how to navigate my life without letting others find out I have DID. This is definitely a disorder of secrecy, as my experience has shown that when people find out you have it, they immediately pivot away from you as if you suddenly became dangerous and scary, no matter how long you have known them and in all sorts of capacities.

Hollywood has not helped with people thinking this is a scary, dangerous disorder because it has really only made movies about DID (formerly MPD) that portray killers and other dramatically scary people.

The truth is that:

1. People with DID are typically some of the kindest people you will meet. They are kind because they have been hurt so much that they would never want to hurt anyone. They are often overly sensitive to not wanting to hurt people in any capacity.

2. I realize people do not want to believe DID exists because then they would have to believe that horrendous abuse is happening to children all over the globe. Because NO ONE gets DID unless they have experienced horrendous trauma as a child, usually before age 8. And the truth is, this is happening way more than anyone wants to fathom.

The biggest truth that people should understand is that we are already living among you as your neighbors, school teachers, therapists, police officers, friends, and so on, and you have no idea we are here because our experience is that we must keep this particular victim status a secret to protect ourselves from further abuse as adults.

I’ll give you an example of what I mean when I refer to further abuse as an adult. The very system in place to supposedly help those of us suffering from mental illness typically refuses to help those of us with DID, and oftentimes doesn’t believe us.

The mental health system is sorely lacking in people who are qualified to help someone who has DID, and both therapists and treatment centers typically won’t work with us because of their own lack of education and fear of DID.

Therapists and treatment centers like Sierra Tucson and The Meadows that specialize is treating “trauma survivors” won’t treat trauma survivors who have DID (they both refused to treat me based on my DID diagnosis).

In my opinion, you have NO RIGHT to call yourself a trauma specialist if you decide the most traumatized amongst us don’t deserve your treatment because you are afraid of your liability, or some other equally ridiculous fear. We are people who deserve help, and it is the responsibility of the helpers to get the education they need to help ALL traumatized people, not just the ones who fit neatly on their trauma spectrum.

When we feel suicidal or in need of emergency help, we can’t just go to any hospital, because most of them refuse to acknowledge or treat those of us with this disorder. Instead they stick a variety of other diagnoses on us and medicate us into wellness (there is no medication for DID), so most of us with DID try very hard not to use the mental health system unless it is one of the rare people or places that understands and treats DID.

The most depressing fact is that DID is actually a serious mental health problem that can be “cured” if the person with DID wants that, and has access to appropriate resources, which they almost never do.

This makes me sad, and I hope it does you, too. Everyday when I am not focused on my own recovery, I think about how I can change a system to get people who have been so severely abused in this world the help they deserve.

No one deserves what happened to them to get DID. As fellow humans, we should all be trying to figure out ways to help our brothers and sisters who were served these horrific starts to their lives. I hope you agree.

An Extraordinarily Brutal Life

I am just an ordinary person who has led an extraordinarily brutal life. My life between 0-11 was the most horrific of all, spending almost everyday being sexually, physically, and emotionally abused and neglected. It didn’t stop at 11, but that was the worst of it.

I have had the cruelest mind tricks played on me, which in some ways were worse than the overt acts of abuse I experienced.

My mother used to think it was funny to take me 10-15 miles from home in a beach town and leave me at some random place when I was 5 years old. I had no ability to do anything in that situation. I usually waited until nightfall when my father would find me and bring me home. So yeah, I have good reasons to feel an intense fear of abandonment.

My father never spoke of this abuse he knew my mother perpetrated on me, because at the end of the day, he loved her and wanted to be with her more than he cared for me.

So-called dignified people in my community had sex with me whenever they wanted, and my mother was so narcissistic and sadistic she helped facilitate this abuse, and I am sure got something out of it for herself.

I’ve been locked in rooms with our local State Farm agent and his children screaming at me that I must accept Jesus Christ into my heart if I wanted everlasting salvation. No matter how many times I tried to say what they wanted, it was never “right” because they were relentless in their brainwashing that I was, and always would be a sinner, doomed for hell. They always ended this special kind of torture by sexually abusing me.

My mom used me as a surrogate spouse when my daddy disappeared on a drinking binge for days or weeks at a time. What seemed like a special relationship with her always turned to a disgusting, sexual experience with her drunken passed out body on top of me.

When she wasn’t sexually abusing me, she spent her time hitting me for no reason, or telling me how much she hated me and how ugly I was. She was quite strikingly beautiful herself, so she often criticized me regarding just about everything that existed within me.

My mom used to make me go to our town’s most reputable pediatric dentist after school so he could sexually abuse me and torture me with dental devices. He used to drill me teeth for the fun of it, and I had no knowledge of what Novocain was until I was a teenager.

My grandmother used to give me to a cult called “The Way” when they came to town. I was driven with other children I did not know out into a dark wooded area where these cult members, mostly in their 20s, would drug us, teach us that we were supposed to cut our wrists and let all our blood out to sacrifice ourselves for Jesus, and then they would sexually abuse us around a big bon fire. Needless to say, I have some very confusing ideas about religion.

My older brothers were what people might have called “troubled” if they were using nice words. Since they were older than me, I really don’t know what they were exposed to to make them so out of their minds. Sadly, they were drug addicts and drug dealers at an unusually young age. This brought me lots of unwanted sexual abuse, torture, and violence.

My oldest brother was like my mom, sadistic and sociopathic. He would go out of his way to torture me with pleasure. He would rape me regularly, sell me to his friends for sex, and often try to see how close he could come to killing me without actually killing me.

My middle brother sexually abused me to around age 7 or 8, but one day he was the first to tell me that you are not supposed to have sex with family members. He never personally had sex with me again, and would try to protect me from my oldest brother when he was around. Still, he could not even put a dent in the madness and abuse that came my way from all sorts of places. Though he is probably the most troubled in our family now, I imagine that is because he had a conscience and suffers from extreme guilt and sorrow over what happened in our family.

The strange thing about our middle class family is that all the kids in our “community” had sex with each other from a very young age. This was an all the time thing, and sanctioned by our parents. This was our normal, and usually involved group sex, but not always.

I’ll never forget spending the night at one of the boy’s houses when I was about 7, and he was having sex with me in his bedroom, and his mother came in and put the laundry away while it was going on. It was as if nothing was wrong, and nothing needed to be said about it.

I would venture to say that by the time I was 6, I had more sex with people than most people do their entire lives.

Why I chose to survive this life I was living is often a mystery to me. A life where no matter how “good” I tried to be, I was repeatedly abused, neglected, tortured, and exposed to mind control and religious craziness.

I didn’t survive because I was so strong and could see me making a better life for myself one day. I survived because my mind split off over and over to deal with my reality. I didn’t intentionally do it. It is supposed to be some lucky source of creativity and intelligence in my brain that allowed me to do so (which I don’t fully agree with).

The splitting of my brain has left me as an adult with Dissociative Identity Disorder (DID), formerly called Multiple Personally Disorder. It is not fun or interesting to have DID. Maybe it is fascinating to those who don’t have it. My life is an absolute cluster f*ck on most days.

As someone with DID, I have more parts of myself than I can count. I am so screwed up that half the time I don’t even know myself that I am not the personality that is “out front” talking to someone. My brain is seriously impaired memory wise. It is like having dementia since I was 21.

I can’t remember huge and significant parts of my childhood, and even positive memories of my adulthood. It is all a mystery that I continue to strive to figure out and fix.

Honestly, I don’t really know if there is a “fix” but since I have kids and won’t kill myself because of this, it leaves me with little else to do but to try to fix myself, and help others who have suffered similar plights.

In psychiatric, psychology, and other mental health schools, they teach that this is a rare condition, and spend virtually no time teaching people how to recognize and treat it. It is by no means rare.

So many children are abused at this level to create this disorder. I know people don’t want to imagine abuse on this level, but it is true. People just don’t end up with this disorder without suffering extreme abuse or trauma at a very early age.

For the fun of it, you can visit the endless pages of survivors who have DID on Facebook. You will see this is not isolated to a few of us, or isolated to any one country.

DID is real and awful to live with, and those of you who care should be doing more to help the most wounded of us.

Do you realize if we go to an emergency room and tell the people we have DID, we will likely be completely discredited as crazy and possibly put in the psych ward even though we are coming in for a medical issue?

Do you realize the majority of mental health treatment facilities refuse to treat those of us with DID? Heck, the majority of therapists in all countries don’t want to treat DID, and thus refuse to.

People like to think of us as dangerous and scary, but in reality, people with DID are often the kindest people you will meet. But, we can’t change the Hollywood version of DID that is probably the only knowledge most people have about DID.

In a world where there is so much injustice, I guess I can’t expect you to care about this abuse of DID people as adults. But if you do care, I hope you will help me make the world a better place for those who are most wounded amongst us.

Stand up for what is right. Stand up for the most wounded.

Knifes in your soul

I have come to realize this past year that even though I was for an extended time extremely high functioning and stable, that I am actually among the most severely injured from a childhood filled with abuse and other horrific things.

It is not cool to be in this club of the severely injured because with these injuries comes damage, lots of it. And I have found that the mental health system doesn't like messy, severely damaged people.

I am complicated. The affects of my abuse have left behind a complicated and difficult set of symptoms. As a result, my soul has been repeatedly ripped out this year by people rejecting me or my symptoms or my diagnosis of Dissociative Identity Disorder.

It seems no one who knows how to treat this disorder and my symptoms in a way that would be effective wants to help me.

Rejection. Rejection. Rejection.

Laughingly, I am not supposed to take it personally, or believe there is anything inherently wrong with me.

I am wished good luck in my future treatment and sent on my way knowing there is no future treatment to be had. I fear I have looked under every stone and have run out of options.

But don't give up. Stay alive. It doesn't matter how miserable your life is. This I am told over and over by those who reject me.

The injuries to my soul have been brutal. Especially since it is over and over. To be rejected your whole life, even by the so-called angels who are supposed to help those of us with these injuries.

It is hard for me not to believe that God is punishing me. I haven't had this kind of knife into my soul so much until this last year. I try to find hope, but then I get the knife in my soul again.

How many knifes to your soul can happen before it is completely dead?

But I am not supposed to give up. I am to keep fighting as if that has ever really gotten me anywhere. Big deal, I'm alive.

I would be better off dead, which is a hard sentiment to swallow knowing I have children I should live for.

It is a double bind. Live in torture or harm my children by leaving them.

Oh, but I am supposed to get better by some miracle that hasn't come for 50 years now……

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.

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…..