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My Struggle with Dissociative Identity Disorder

Being diagnosed with Dissociative Identity Disorder (DID) is a real struggle.

First, I’ve had to work at coming to grips with the diagnosis itself. Then there is my struggle with the alters – I have to find out who they are. I know they’re there, but I don’t know much about them. I have learned the names and ages of some, but not all of them. I am slowly learning their likes and dislikes and why they are there. They all hold memories of my abuse. Memories that I can’t recall.

There is a power struggle. I am the host, and I need to be in control, but some of them think that I still need to be protected so they come out to “save” me. They are parts of me stuck in the past. They don’t know what year it is and often times don’t even know what month or day it is either. I have to talk to them and remind them that I am the host and that I am married and my husband and I have seven kids. It really complicates things when one of them has a crush on my brother in-law.

I don’t tell many people about my DID because it’s a stigma.

Society has a warped idea of DID. Most people still call it Multiple Personality Disorder because they don’t realize that the name (and diagnostic criteria) has been changed. Hollywood often portrays it as a situation in which there is often one very violent alter; that’s not the case for me.

If you want to see what living with Dissociative Identity Disorder is like for me, I’d recommend watching the movie Sybil with Sally Fields. It’s a very accurate description of my experiences with DID.

Inpatient with Dissociative Identity Disorder #3

Mental Illnesses are prevalent in our world. They greatly affect not only the individual involved, but the people around them. In the month of April, we focus our spotlight on Mental Health, in order to heal together and break down stigmas.

We want your stories. How has your own, or someone else’s mental illness affected your life? How are you rising above stigmas?

Please share your stories with us during the month of April.

A bigger obstacle than psychiatric ward staff to the treatment of a Dissociative Identity Disorder (DID) patient is that of a psychiatric doctor. Why? Because there is still a divide between the people who believe/assert/think/etc that DID exists and people who think it’s humbug and that we’re all faking it. The person supposed to treat you may not even believe you are telling the truth!

So you may now understand my relatively high level of anxiety and paranoia when entering a doctor’s office. Either I’ll be respected and treated as an equal, or I’ll be patronized and treated as though I’m just a vivid actress faking a bunch of crazy shit. The third option is that the doc wants to believe me, but actually has no fucking clue about what Dissociative Disorders are, and, evidently, has no clue how to treat me.

My experience yesterday was something like this: if you put the three options within equal distances of each other and drew lines to find the smack middle, my doc would have been sitting on top of the bulge of the three coalescing lines. She had quite a carefree outlook, vivid vocabulary, mild hand gestures. Naturally she wanted to hear everything explained, again, in detail. Fortunately my care worker was with me.

I stared at my thighs, and at my Adventure Time leggings, as the doc said in a chirpy voice, ”You’re not exactly normal, are you? You’re like a splash of color.” I giggled at this – my leggings and my unicorn hoodie were both so colorful I reckon the eyes of passersby would sting. ”No, I wouldn’t say I’m exactly normal.”

The doc decided I’ll stay till Friday, then try being home for the weekend and then come back for the beginning of the week, during which we’d have my second treatment plan meeting.

I have been given permission to take outings during the day. Physical exercise is very important for me in order to keep dissociation at bay, so I went to the gym today, as well as a walk. It is the time of year I wish I lived somewhere else, somewhere where it didn’t start getting dark after 3 pm.

So here I am, sitting on my hospital bed with my small turquoise HP Chromebook purring in my lap, waiting for my designated nurse to come knock on the door again.

A Light In The Darkness: One Year Down

Mental Illnesses are prevalent in our world. They greatly affect not only the individual involved, but the people around them. In the month of April, we focus our spotlight on Mental Health, in order to heal together and break down stigmas.

We want your stories. How has your own, or someone else’s mental illness affected your life? How are you rising above stigmas? 

Please share your stories with us during the month of April.

 

As it stands, my story isn’t on this website. That’s because I’m not quite ready to go into it. What is relevant right now is that I’m the newest host in my body’s Dissociative Identity Disorder (DID) system. I’ve been here for almost a year.

All I’ve really succeeded in was coming to terms with all of the mental stuff we didn’t want to admit to before. Like DID, Borderline Personality Disorder, Histrionic Personality Disorder, Avoidant Personality Disorder, Post Traumatic Stress Disorder, and the fact that the shadow people are actually hallucinations (among with other fun psychosis things). That’s a lot to tackle, and the fact that we’re still here makes me feel proud.

I’m both 21 years old and 11 months old. I was thrown into a breakdown where the former host isolated themselves from all but one of their trusted friends. I’ve gotten into a relationship with said friend, and he is the kindest soul I’ve ever (virtually) met. He supports me and makes me feel like I am not completely drowning.

I’m working on freelancing to save up to go back to school (they flunked out of college and now I’m here, aware of most of my limitations and certain to make sure that we succeed this time).

It’s almost been a year, a year of preparation for our lives. A year of learning about myself and my headmates. It’s been a fucking miserable mess of a year, one with lots of breakdowns, self harm, and suicidal thoughts 24/7. But I think I’m going to make it.

I want us to make it.

Inpatient With Dissociative Identity Disorder #2

Looking back on my/our times inpatient, I see an array of different experiences. Whilst at first I felt locked up, caged and incapacitated, later on I felt safer and more in agency of myself. My first inpatient experience was in 2010. This is what I wrote about it:

“I was in psychiatric hospital from April to June 2010. The rooms were cold, with white walls and loud air conditioning. I always fell asleep watching the wall, the shadows portrayed on it by the blinds.

(…)

The worst of all was when the visits went from once a week to none. When my phone was taken away from me. When I wasn’t allowed to see my parents.

(…)

Being caged in a room with no lock, no security, no privacy, without any contact into the world — and no hugs, that was what hospital was like.

I can’t believe I went there by choice.”

The hospital rooms I’ve been in still aren’t all that comfortable. The one I’m in right now is a mix-match of blues and purples (with a blue ceiling, of all things!) and the clock on the front wall is loud and crooked.

Here, we fall asleep with not just our teddy bear but also with our unicorn, bundled up in surprisingly comfortable hospital sheets. Here there is much less need for the sort of musical escapism I did as a teenage patient. Here I am a subject, an agent in my own treatment, and my folks no longer dictate my medical ways. On the contrary, I/we decide how and when and why I am treated.

I was visited by a friend last night, and would most likely be visited by my family and other friends if I were/am to stay longer. My friend gave me the biggest of hugs and played with my hair and kissed my forehead while we lay on my hospital bed talking at ease.

This time round, I have my phone, my laptop, my tablet – all connection to the outer world is intact. We are not trapped or suffocated, though staying within these four walls does get a tad bit boring in the end when I’ve finished all imaginable tasks on my computer.

And I do not regret coming here by choice, or having come here the last few times this past February and the year before. In between we have been treated in an open Daytime Ward, a six-hours-per-day sort of thing, like a part-time job except your job is, well, your own health and well-being.

Unfortunately, it is still a struggle for the staff to understand our condition and our way of being. The phrase ”So I hear you have these personalities?” is still a frequent visitor, and if I don’t remind them they’ll forget I’m not L (unfortunately, L is still up in her Limbo Room).

I’m seeing the doc today. Going to determine whether I leave or stay. Wish me luck!

By-theclocksystem

Inpatient with Dissociative Personality Disorder #1

I’m sitting in an ambulance. The blonde-haired paramedic gazes at me in the blue light, asking me if it is alright that the proper lights are off. I suppose something in my face alarms her enough to gasp: “Is it too dark?” I reassure her with a shake of my head that no, it isn’t too dark.

I feel childlike in my Adventure Time leggings and sweatshirt-tunic. I never noticed the white lines on ambulance windows were full of glitter. One of the littles hops up to front in a gush of joy. Glitter, of all things, glitter! I swallow a glomp of air and push her back in the garden with the rest. L peeks through the slit below the door of the Limbo Room somewhere deep inside.

Emergency Rooms, ambulances and psychiatric ward workers have always looked at us weirdly. The paramedic tap-taps on a Panasonic Toughbook. “Your care worker said you have these personalities?” she says, the question mark imminent in the air around her. Yes, I think to myself before even considering saying it out loud, my head moving in what could be called a nod. “I have Dissociative Identity Disorder,” I say out of habit. I should have used a plural pronoun.

It is the first time being admitted since this past February, when my dissociation had me walking into busy roads without looking. This time is different, though. This time it is even more confusing to the paramedics and the psychiatric nurses. The paramedic waits patiently as I try to remember which day of the week it is. L would know. L was here on Wednesday, that’s several days ago – Saturday, I blurt out slowly. What month, what year? Holy fricking shitballs. I find the right answer somewhere in L’s frontal lobe. November, 2015.

The waiting room is full, as per usual. Nosebleeds, broken ankles. Normal problems. The psychiatric nurse sees me after 45 minutes. A young fellow, agitated and, somehow, a bit amused. I try to tell everything, but it is difficult. “Do you remember [this]?” No, no I don’t remember doing that, that was another alter. “Why do you think L is gone for good this time?” I just have the feeling. I tell the guy that I’m the replacement. That I’m the one to take charge in case L is gone for good. His face is full of confusion.

In the waiting room again. The nurse called the doc. A foreigner, for a change. Not that I mind. I like the little lisp in their voice as they utter their sentences. The doc wants to hear the same story. I look at the nurse by the computer, apparently with enough agony on my face to make him state my dilemma instead. I add in a few details and listen to the doctor’s remarks, with a tight pull in my stomach each time he sounds less and less convinced. Finally we get to it: suicidality. I explain the monsters that are Dawn and Claudia, the cuts that have been made, the writing in blood in my journal, the knife brought to work with us. This peaks the doctor’s interest. “Oh yes, if that is the case, then we should take you in for a few days, as a crisis admission.”

The ward I know well. I’ve been here several times. I wouldn’t call it a second home, but I would call it safe grounds. We hand in our tweezers and nail clippers. Make sure nothing else sharp is left on us. Our psychiatric nurse at the ward is a young lady with a pretty braid in the front of her hair, dangling around as she speaks with a multitude of head gestures. She wants to hear the same story, but I tell her I’m too tired. After prying some things out of me, she retreats to the nurses’ station. It is only hours after that, we get our precious hospital bracelet, a Beck Depression Inventory and other forms to fill. What she doesn’t know is I would need ten BDIs, one for everyone. Maybe eight since the littles would just be confuzzled at the idea of a weird form to fill and even weirder questions to answer. I tick in some boxes that make me look severely depressed. Lydia must be close to front.

I unpack Bunny’s teddy bear and unicorn and feel her refreshing presence. The little five-year-old treats things with such openness and curiosity that I cannot help but smile and let her come closer and closer to front. I know she’ll be upset to be alone in a big three-person hospital room, but I am far too tired to take care of the body any longer. I step back in the garden and let her go forth, watching as she bundles herself up in pink hospital pajamas and her unicorn hoodie, giggling as she brushes her teeth with such vigor (need to kill all those germs). Finally, as she settles in bed, I let my guard down, retreating up the stairs inside the Clock and to my room.

By-theclocksystem

All Is Lost…

I don’t know where to begin. Too much has happened in my life, it even seems unreal to me at times. My coping mechanisms are different than most people because I have Dissociative Identity Disorder, or DID for short. I will try to be as clear as I can about the events while protecting myself from the grief.

The first trauma – I was sexually abused by an older brother from ages of 5 until 9. That is when my DID began. When I was 9 years old, my mom committed suicide. Her suicide had 2 lasting effects on my life- 1st, it sent my abuser away to live in another state and 2nd, it formed a wall inside of me that will always and forever prevent me from taking my own life.

My twin brother and I went to live with our paternal grandparents. It was not always easy there. I don’t think or believe the same as the rest of my relatives, so while not exactly worthy of outright hate, I was not worthy of unconditional love either. I tried to earn love and respect by getting good grades in school, but that only seemed to alienate me further. My grandparents were hard working farmers and completely illiterate. I would keep my mouth shut, so my “book learnin” wasn’t quite so obvious.

It wasn’t that they didn’t care, I think they just didn’t know how to respond to me. They felt uncomfortable with me. I loved them anyway.

My dad was a truck driver. He drove “cross country,” so he wasn’t home much. Once, he was gone for 2 years. I used to sit on Grandma’s front porch and wait for him, hope in my heart for the slim chance of him coming home. When he did arrive, he would flood my twin brother with gifts and stories. I would get a hug and a pat on the head. I wanted to sit on his lap, to hear the stories, to ride in the “big rig” with him like my twin. I still don’t understand how being a girl made me unequal. I needed him to love me the way he loved my brother, but that would never be the case.

After I was married, he came to my house looking for my twin. He had not yet met my newborn son. I begged him to come in. I would make coffee, we could wait together for my brother to come home. He stood at the door and said he would come back when my brother was home. I shut the door, slid down to the floor and cried. Why was I so unlovable? Why was I not worth an hour of his time? After that, I decided that I was done begging for his attention. I had my own issues to worry about.

My husband was abusive. I left him when my son was 6 yrs old. I moved in with someone I met online, a terrible decision because he was not good for me or my son. I left him too, and quickly found myself living in my dad’s basement.

I went to college, earned all A’s and a degree, and met a wonderful man. He does not abuse me in any way, and I finally felt loved for the first time ever.

My son was 15 by then. He had undiagnosed autism and an IQ of only 72, but we tried so very hard to create a safe and loving home for him. Sometimes it was really difficult, he was rebellious towards my boyfriend, never wanting to listen to him. I cringed every time I heard him say, “You’re not my dad.” We worked to try to make things better.

When my son was 19 years old, he came home from school one day and told me he had met a wonderful girl and wanted to date her. The problem was she was only 14.  Her parents were divorced. I spoke with her mom, and she was alright with the situation. I never heard from the girl’s father, figuring I would get the chance at some point because he welcomed my son over to his place once or twice.

It was early morning on a Friday. I went to check on my son. There was no answer when I knocked on his door. I open his door a crack. It smelled like old socks because he never cleans it, but he was not in bed. His backpack was gone. I figured he must have gotten himself off to the school bus by himself, unusual, but I was happy about it. I spent the day dreaming of the wedding I hoped to be planning with my boyfriend soon.

When my boyfriend arrived home, I realized that my son was not home from school yet. I told myself he was probably at his girlfriend’s house having dinner, so I had my boyfriend call over there. At first, my boyfriend was silent, then he stood up and turned on the TV. There on the news, was a picture of my son and his girlfriend. The caption on the picture said, “Man, 19, kills 14 year old girlfriend’s father.”

In that moment, I lost everything that I had ever held dear, my hopes and dreams gone, blasted away in pain, regret and remorse. What did I do wrong? How could I not know that was going to happen? I blame myself every single day …if only I knew what was happening, if only I would have done things differently …if only …IF FUCKING ONLY!!

That was 8 months ago. I have not been able to touch my only child. He does not emote very well, never has. He will go to trial in the spring. The best I can even hope for is that they will put him into a mental institution instead of a prison …but how likely is that? I don’t know. I know if you are capable of doing something like that, you need to be kept away from society. He had never been violent before, and has not been violent since. He waited for the police, admitted his guilt. He cooperated and did not flee.

My son was nearly strangled to death already. It is a painful reality that he will not do well with the rest of the prison population. He cannot read people’s emotions, and does not understand when someone is being sarcastic. His mental age is 14, and he is easy to manipulate.

My boyfriend is still with me, thankfully. My twin still talks to me, but my dad and grandparents passed away before all this happened. The rest of my family speaks ill of me because of my “different” ways of thinking. My community hates me because I am the mother of a murderer. I feel completely and utterly alone.

I am not suicidal, I won’t take that road, even after all of this, but I am not actively living now either. So, where does that leave me?  I don’t know, but I don’t like it.