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?

Suicide Cloud

When I look to the sky it can seem sunny and blue, and then without me noticing the change, the next time I look up the sky is gray and cloudy. I wonder to myself how long it has been that way and I just didn't notice the change. I am present, and then gone, and then eventually back again and the sky is not the same.

Today, I moved from one Airbnb to another in sunny California. The new home is much nicer. There is more light coming into the unit, it is in a great walkable neighborhood only 10 minutes from the beach, and it actually has a view.

When I arrived here, I felt as though I could breathe better than the last place, as the first place was like living in a box and had one view of a literal concrete wall, and another view of an overcrowded apartment complex. I felt anxious outside that apartment, so the safety of this place in this location has reduced my anxiety some, which is always a plus.

But, just as I wasn't watching the blue sky turn to gray because I was somewhere else in my head, I didn't understand the drastic change in my mood.

I went from happy to suicidal without really knowing why or how it happened. I panicked and started looking for therapists online who meet with people on Saturdays (apparently, that's a common thing here in California). I didn't end up connecting with one, so just did my best to pass the time to put this day behind me.

But for the brief moments when the distraction didn't work, I could imagine myself hanging dead in this new beatific apartment. Or, I would look at all the pills I have with me and realize I have enough to kill myself.

This is my life with Dissociative Identity Disorder.

I have no one to turn to. I know better than to call the treatment center I am currently enrolled in Monday-Friday. Even though they have someone on call for after hours, I couldn't bother them or put myself in the position of being too suicidal or just too much for this treatment program also.

Just tough it out my insiders say. Do what you are good at. We don't need anyone. People suck and they just hurt us over and over.

These changes in mood, especially the severity of the changes when I have no idea what is happening is so maddening. Maybe if I stayed more present more of the time this wouldn't happen, or at least I would understand why.

Who am I kidding. Staying present sucks most of the time. I have been missing in action my whole life, so why would I want to change it now.

My life is mostly total shit. Why would anyone want to show up and be present for that?

I realize this attitude doesn't help my recovery journey, but it is authentic for where I am in my life today.

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…..

Arizona Desert

I am at a treatment center called Sierra Tucson in Arizona for pain and trauma. I have been here 11 days now, and I am having the most amazing treatment experience. 

It is the first time in my life I have felt like I mattered, and my feelings were important. They have a completely different approach to trauma treatment than all the other trauma programs I have gone to. This is working for me!!!

I get such a broad combination of therapies to help me. I am doing massage, shiatsu massage, acupuncture, physical therapy, chiropractic, EMDR, somatic emotional release, somatic experiencing therapy, equine therapy, individual therapy, group therapy where we actually talk about our trauma, and lots of educational lectures and other services.

It is a grueling program, but I am hanging in there and doing it, and it is helping me so much.  I highly recommend if you are up for the challenge of pushing yourself. This used to be a self-pay treatment program, but they now take many private insurances.

I always want to pass along things that work for me, so if you are considering this and want more information, let me know. It may take me a day to get back to you, but I would love to tell you about my experience on this journey so far.

Sending love from the Arizona desert!

Just a Normal Childhood

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

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

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

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

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

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

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

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

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

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

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

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

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

A few things about me

It is April 2017. I do not know the exact date because as a person with Dissociative Identity Disorder (DID), I am particularly bad with remembering dates. On good days, I get the month and year correct. This is a good day.

It is challenging to begin a blog about your life when you struggle with amnesia to the degree I do. I would like to start with my childhood, so you know how I got to where I am, but I truly don’t know if I know enough to start from that place. Maybe I should talk more about today— how I am today. Who I am today. What my days are like, or something in that neighborhood.

I think I am what is called the host in this female body. Since I can’t remember much of my childhood, it is hard to know that with certainty. But, if it is true, it means I am the one who was originally born into this body. The one who was born into a horrific existence and needed saving by the creation of other insiders in multiple systems in my brain. I realize that statement is probably confusing to those who aren’t DID. I will try to explain things the best I can as we go.

I am not sure how many other “insiders” live within me—-for me, that refers to the other people who live inside me. Therapist hate when I say that because they say of course you can’t have all those people living in you. I know we only have one body, but I want you to know my experience. As of now, I feel like these other parts/alters/insiders are like other people living within me. I am not psychotic and believe they are actual people in my body, but then again maybe it is psychotic to believe in feeling the experience of having other people live in your body. I realize that sounds fairly confusing, so let’s leave that alone for now.

My life is not so great now. I am currently sitting in a closet hoping to have privacy and peace so I can write this blog. This blog has a threefold purpose: 1. to educate people about what it is like to live with DID. 2. to provide information and support to those who might be struggling with DID. 3. and selfishly, a way to work on my own recovery. Yes, I do still believe in recovery. I read somewhere recently if you have no hope, there is no point to living. Today, even with all the struggles and setbacks I have, I still have hope. That may change tomorrow.

My life is not very dramatic by appearances, so you wouldn’t know I had DID if we just casually met. In fact, almost everyone in my life from neighbors and friends to coworkers I have known for years have no idea. It is lonely leading this secret and inauthentic life, but the stigma that goes with DID is so severe that it is too much of a risk to my family in many ways that I am sure I will talk about often on this blog.

Lots of insiders pass themselves off as me (meaning people think they are talking to me, and that I am just in a different mood), and that works well for my life. My therapist, one friend, and my spouse are the only ones who truly know much about me. Sadly, my therapist knows me better than anyone. I think it is sad. I don’t mean to be this way, but it is what it is for now. One day I hope to be able to tell the world who I am.

When I am doing ok, I am intelligent, passionate, resourceful, funny, and a good person. By some miracle, my childhood and the resulting mental health problems, didn’t take away my ability to be a good parent. This much I know and it keeps me alive on many bad days. My children do not know about the DID or the child abuse because they are still young.

One thing you may read from me on this blog is contradictory thoughts. This is something I deal with on a regular basis, and it doesn’t make things easy for me on most days. As I always try to inform people no 2 people with DID will be identical. We all created this condition somehow with only a child’s mind. Some people with DID have nice orderly DID systems where everyone has a name, age, role, and decisions are clearly made by certain insiders. That is not my system. Mine is more confusing. Sometimes it is higher functioning than those with nice and neat systems, but I have a system of insiders who operate from confusion and chaos on a daily basis which makes life that much harder. For example, sometimes we may get in the car and change directions of where we are going several times because different insiders have different ideas about where we should be going. And sometimes we just pull into a parking lot and sit there for hours doing nothing because we don’t know where we are going.

Oh yeah, you will here me or others in my system refer to us as “we” a lot in our writings. Just know we are talking about the whole system when we use the term “we.”

I realize this first entry is scattered, but I think scattered is ok because it is getting me started on this new journey.

I want you to know a few things:

DID is real. It is probably the most under-diagnosed disorder despite its official status in the Diagnostic and Statistical Manual of Mental Disorders (DSM V). Most medical and mental health practitioners either don’t believe in the diagnosis or they have not been properly trained to recognize it when it is right in front of them.

DID will typically not be the only diagnosis the person has. You can expect Post Traumatic Stress Disorder to go along with it, and also conditions related to depression, anxiety, personality disorders, and definitely attachment disorders. It is fairly common for a person with DID to have issues with substance abuse, especially if they are trying to medicate the symptoms they are experiencing. I have also found that Bipolar is now often diagnosed with DID, but if you ask me, Bipolar has become the new ADHD as far as being incorrectly way over-diagnosed. Just my 2 cents. A lot of these disorders overlap, and hopefully the next DSM will better categorize these diagnoses.

I hate the organization calling itself the False Memory Foundation. As far as I am concerned, many of them are perpetrators or no better than perpetrators for the damage they have done to many people who both suffer from dissociative disorders and for those who used to treat those with this very difficult disorder. Though they are weak today, I blame them for the huge lack of resources available to people with dissociative disorders. I blame them for the majority of mental health practitioners who were not taught anything about DID, or only had a paragraph in their textbook about DID.

DID is not what you see in the movies or television because as fascinating as some things are about this disorder, it is just not entertaining enough to keep you interested so that you can make someone a bunch of money in the entertainment industry. The recent movie “Split” which I have not seen out of principal, but know enough about it to say that is a completely unrealistic portrayal of someone with DID. I have met somewhere between hundreds to thousands of people with DID, and I have never once met one who was violent in some sort of criminal way. I am sure it is possible, but it is just not something I have seen, and I have seen a lot. In fact, it is commonly known that people with DID will often sacrifice themselves to help others. We were not raised to put ourselves first.

I will only tell the truth, but it is my truth. Whether you believe me or not is not important to me. I know many would not believe the story of my life, and the results I have been living with, but that’s ok. I really don’t care.

A person can only develop DID if they experience horrific trauma as a child. This could mean children who are living in countries where bombs are going off on a regular basis, but I have never seen that in person, but it makes sense to me that it is possible. The most common cause of DID I am familiar with is a result of horrific child abuse, usually starting much earlier than the age of 9. As far as I know, there has never been a case of DID as a result of adult abuse.