Figuring out the puzzle

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When I was a child, my mind was specifically made to not think. I wasn’t to understand what was happening. People around me did things to my mind to ensure that. I was simply worthy of being kept alive for the purposes of a lot of sick people.

The first time I remember something substantially unusual about my life was when I was around 10 and the first Star Wars movie came out. Back in those days, we didn’t have movies like that, so it was a big deal to be going. I remember waiting outside the theater with my friends (another family took me), all of us filled with excitement. The next thing I remembered was walking out of the theater with my friends as they were excitedly re-enacting the movie scenes. But, for me, I had no memory of the movie at all. I was terrified someone would find out that there was something terribly wrong with me, so I didn’t say anything to anyone, and pretended to know what the movie was about for months. It was so disturbing for me, I still have not watched that movie.

Then, throughout my life there were voices in my head commenting on various things and criticizing me. Even though I heard multiple voices and sometimes we talked back and forth with each other, I talked myself into believing that everyone had voices in their head. It was especially easy to do that when the whole “inner child” concept took off.

In high school, I didn’t put much thought into it, but I changed identities frequently and maintained opposite identities at the same time depending on who I was around or what I was doing. This was not your normal finding your identity experience. This was bizarre, and I knew it, but chose not to think about it.

Some of my identities in high school were band geek, druggie, political activist, ROTC rising star, non-drinker, heavy drinker, business entrepreneur, school skipper, slut, good girl, athlete wannabe, advanced student, special ed student, and of course the lost child who wanted help but never asked.

By some miracle, I got into the state college. It was a miracle because I hadn’t remembered or paid attention to about 90% of what I think they taught in school. I got in because I had such an interesting list of activities and successes (minus the not so good ones I left out). I was let in under a provisional status that gave me a couple of quarters to prove that I could do college level work.

I started college and was driven to succeed. I did extremely well in most subjects. I spent my first ten weeks learning everything important for college. I didn’t even know how to write an essay when I got there, but I worked hard and caught up with my peers. I became extremely good at debating both sides of the issues. I believe this was probably because I was able to switch into different parts to argue each side. This got me heavily involved in politics on campus and in the state. I became a rising star in the political successes I experienced. I was also really good at accounting, which was weird because numbers tended to bore me, especially as a career. But, I was good at it.

I fell in love with a guy the first quarter I was there. I lived in a co-ed dorm, so we had some wild parties and it wasn’t unusual for boyfriends and girlfriends to live together. In our one dorm room, we had 5 people living there, and it wasn’t much bigger than a regular secondary bedroom in a house without a bathroom.

Sex, alcohol, pot, and pizza were everywhere. Though I was in no way a virgin when I entered college, many of my dorm mates were, and were losing their virginity quickly and stupidly. I had one really stupid sexual experience with a guy I didn’t even like because I was trying to fit in. Dumb mistake. That experience started something that stayed with me in a negative way, even to this day.

The man I loved, and did want to have sex with started out ok. But then I quickly started to have problems having sex. I would just freeze,  have a flashback, or just not want to have sex for reasons I didn’t understand. I mean, I loved this man, I was attracted to him, I felt safe with him, but as each day crept along it seemed to get worse, except every once in a while I would change in a way I couldn’t explain and have a good sexual experience with him. It was good sometimes, and bad most of the time. I truly had no clue what was wrong with me. He loved me and wanted to stick it out with me, but when we hit the 3 year mark I let him go. I couldn’t do it to him anymore. I knew something was really wrong with me because my sexual problems kept getting worse, and I didn’t think it was fair to do that to him.

I was able to keep succeeding at some important roles and clubs at school, and my grades were very good, which landed me a top job with a highly competitive corporation. They expected me to be somebody based on my resume, but none of us had any idea what was brewing inside for me.

After achieving success after success my Senior year, I found myself feeling depressed, crying a lot, and thinking of suicide. I had no idea what was wrong with me, so I kept it a secret and went to the elaborate student mental health center at the University. At the student mental health center, the psychiatrist literally yelled at me and told me to stop crying, and gave me a prescription for Xanax. At first it was helpful to get me through the days and the tough academic demands, but then I started reaching a point where I needed to keep taking more and more to feel ok. Finally, I started feeling suicidal again, and fortunately I found a good therapist and psychiatrist off campus who helped me get inpatient at a local private psychiatric hospital. I have no memory of how I found those two people who helped and cared about me a great deal.

I spent the next 6 months at the hospital, kind of a psychiatric mystery on why I wasn’t getting better. At the time, I was put on every anti-depressant available, and none of them worked. At the same time, I started to realize these strange conflicting feelings going on inside me. I was attached to my therapist, and I remember one time she was going to be out for a couple of days. During those couple of days, I was feeling ok, but then I also started having suicidal thoughts and other conflicting thoughts. I remember the voices in my head increased and were talking to each other. I also remember my body not always feeling in my control.

I tried to discuss this with my therapist and psychiatrist, and unfortunately, they did not believe in dissociative disorders, or at least thought they were very rare (not true). So, they continued to believe I was only suffering from Major Depression, which I was, but I also had other complicating factors going on, which explained why I wasn’t getting better. They finally put me on lithium, the drug mainly used for people with Bipolar illness, and it seemed to help my depression, or it was completely a coincidence.

I was finally well enough to leave the hospital. I still had serious mental health issues going on, but I finally was able to go home. Going home eventually made it so I could see an expert in what I suspected was going on with me, and she diagnosed me with Multiple Personality Disorder, which is now called Dissociative Identity Disorder. I hadn’t read up on it really because there was no internet back then, and books hadn’t really been published on the subject, or at least available to the public. I just knew it felt like other people were living inside my body, and I learned about therapists who were treating this condition. I knew I was not experiencing life like the “Three Faces of Eve” or “Sybil,” but a less dramatic form of that was taking place in my life.

So, essentially, I self-diagnosed myself. I do not say this to brag, but to let you know the frustration I feel for myself and others who are in a mental health system that refuses to wholeheartedly believe in this diagnosis, or believe it is so rare that they don’t expect to see it in their professional career. The truth is it is extremely common, and somehow, we need to wake up mental health providers. I can’t tell you the number of mental health professionals in my current city who call themselves “trauma experts,” but refuse to learn about or work with people who have a diagnosis of DID. As a result, people with DID spend years and years getting the wrong kind of treatment, and essentially lose a significant part of their lives to the illness because the mental health professionals diagnosed them incorrectly because of their own bias or ignorance. This must change.

Just a Normal Childhood

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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.