DID is NOT a party

Lacking a consistent voice makes me confusing to those outside and inside of me.

At night, I often write things, whether a blog article, letter to someone, or a quick text. Sometimes I shop on Amazon while others are sleeping in my house. The difference for me is when I wake up in the morning it is a gradual unfolding of what I did the night before.

I see e-mails from Amazon alerting me to a purchase I don’t remember, and often don’t need.

I sometimes get an emergency call from my therapist before I have even awoken asking me if I am alright. That usually means some part of me has been texting or emailing her.

I almost never remember blog posts that have been written under our Mistaken Survival blog. I read them over and over, each time feeling like the first time I have read it, even though it was authored by this shared mind of mine.

I have learned to shrug and stay quiet in response to other people’s reactions to something I have done that wasn’t me. I kind of freeze because I know it was me, but it also wasn’t me. What’s the protocol for that scenario?

The mind is so adaptive. It is amazing I get through the days, but somehow I do.

It feels a lot like being lost, then found, then lost, then confused, then found, and on and on.

Unfortunately, this makes for a really spotty memory. And though I get by with the adaptive skills of my brain, it leaves me empty on the days I have the capacity to think about how little I remember about my life.

I read earlier today someone writing about how they don’t think of Dissociative Identity Disorder as a disorder at all. They see it more of a blessing and an alternative way of living.

Though I try my best to respect other’s differing opinions, it pisses me off to hear someone who has this disorder glorify it and act like it is a positive.

Here is the one true thing most people believe about DID (though not all parts inside of me agree with this opinion): if you have DID, it helped you survive as a young child when your life was so traumatic and overwhelming that your mind would not have survived otherwise.

If you truly have DID, it means there is major distress going on in your life. You can’t get the diagnosis if you are not impaired in some way.

Though I love all parts of me, even those I disagree with or can’t understand, there is nothing wonderful or great about the way we live.

I wouldn’t wish this chaos and confusion and missing life on my worst enemy. It sucks. It is not fun.

Some people describe elaborate parts who have hobbies and like to play like children. Those parts for me are hurt and damaged, and they are not having fun. They are mostly terrified every minute of their experiences.

Carrying around trauma on a daily basis and trying to survive is not fun. My life is extremely difficult, and profoundly sad due to the lack of connection I feel to the world and those in it.

This is no party. For me, it is a serious ordeal of surviving a life of torment and confusion.

I’ll let you have your opinion, and do my best to be respectful, but I can’t make that promise on a bad day.

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.