5.1
May 31, 2016

What it’s Like to Live with Multiple Personality Disorder (& the Stigma Behind it).

via author jane hart

While surfing the web for some inspiration about my college endeavors, I stumbled upon an article published by the Harvard Gazette about something very near and dear to me.

The 2012 article, titled A Story That Doesn’t Hold Up, is about the amnestic barriers between self-states in Dissociative Identity Disorder (DID). Dissociative Identity Disorder is defined as the existence of two or more identities in one individual that recurrently take control of that person’s behavior, memories, affect, etc., and is accompanied by amnesia or “lost time.”

The author of the article, Peter Reuell, spent his own time and effort discrediting a disorder that effects approximately 1-3 percent of the population—that is millions of people. This kind of discrediting isn’t uncommon; universities teach future therapists that DID is controversial and very rare. Even Harvard University Professor Richard McNally suggests that the individuals suffering from DID are just acting out in distress, and do not really have multiple identities. He refers to DID as a “concept”—defined as an abstract idea; a general notion.

The stigma surrounding mental illness—DID in particular—is staggering.

My goal is to inform, to inform from experience.

Stigma and the unwillingness to learn about mental illness are problems in part, because just hours ago I was in the middle of a therapy session when I “switched.” Switching is the term used when a DID patient transitions between identities. This process can lead to severe headaches, confusion, “mind fog” and painful shame, amongst many other difficult things. (You may be familiar with  Steven Spielberg’s Showtime series, United States of Tara—a very dramatized, but informative show. In the show, Tara’s switches are extremely florid, but in reality only about 6 percent of people with Dissociative Identity Disorder have noticeable switches.)

People with DID generally prefer to keep this fact hidden—it keeps us safe from abuse and can feel like a dangerous thing to be known for.

Before I discuss how mind-blowingly ineffective Mr. Reuell’s argument is in the aforementioned article, I’d like to point out one harrowing and eye-opening fact: 70 percent  of all Dissociative Identity Disorder patients attempt suicide, more than any other psychiatric disorder. These individuals are in such distress that suicide is a commonly chosen option for them. And I can tell you that, yes, it is that difficult living with a plethora of differing opinions all swirling around inside of your mind. It is that scary not knowing when you’ll “go away” and when another part of you will “come out.” It is debilitating to feel out of control in this way.

I believe it to be most reasonable to treat this population with extra respect and compassion, offering the help they need without judgment.

I wholeheartedly believe that DID is so controversial because it is difficult to comprehend or relate to. It is difficult to believe that there are several “personalities” living inside one person’s mind—that sounds insane! It does not help that the media dramatizes this disorder—a fact which even influences the psychology textbooks used in colleges across the nation (I just had a great conversation with an instructor about such textbook inadequacies).

Again, this is a problem for all of the individuals suffering from Dissociative Identity Disorder.

Dissociative Identity Disorder is caused by severe, ongoing childhood abuse that begins early in life. It is thought that having many medical issues and surgeries growing up can also partly cause DID. Dissociation is an extremely effective survival tool for abused children, as it compartmentalizes the abuse, allowing them to live out their childhood as normally as they possibly can without becoming too overwhelmed.

Our incredible human brains have the capacity to create different identities to hold memories that it knows the entire person cannot handle; placing amnestic barriers between these identities. fMRI studies have shown that when a DID patient switches between identities different parts of the hippocampus (the brain’s memory center) light up, giving us a clear image of the presence of amnesia. Mr. Ruelle’s article states that there is no evidence that amnestic barriers exist, and that DID is purely a patient’s way of expressing distress. In short, he is basically saying that those patients should pull themselves up by the bootstraps, quit lying about their “lost time” and express their pain like normal individuals. (This is my own interpretation of what this article suggests, but I think other DID patients would agree.)

Disclosing the fact that I have Dissociative Identity Disorder is a big deal—in fact, only two people know this about me aside from my primary therapist.

However, I believe shedding light on the disorder, the controversy, and the bold truth, is more important than keeping secrets. My diagnosis is not your normal secret; is it one that protects me from people like Peter Reuell. The denial I have for my own psychiatric disorder is already strong enough; my wish to be normal is already solidified…I do not need someone else telling me that my day-to-day distress is fabricated.

No wonder 70 percent of DID patients attempt suicide.

My point in sharing my opinion about this article is not to share my anger and frustration; rather, I am using it as a framework to raise awareness about this commonly misunderstood illness. My intent is to offer the world a glimpse of what it’s like to live with this.

Here’s a snapshot of a typical day:

6:00 am

I awake in a sweat due to an extremely realistic dream; reliving or re-experiencing a traumatic memory. I email my therapist or text my best friend for comfort.

7:00 am

I can’t decide what to wear for the day. I have about 20 different opinions inside, each advocating for their own style of apparel. I end up choosing a mixture of three after getting a sharp headache from all the noise in my head.

8:00 am

Take my two little boys to school while trying to battle the voices that seem to dominate my thinking and trying to remember to give my son his lunch before he heads into school. I don’t recall making him a “cold lunch,” but there it is, packaged up in a brown paper sack awaiting his grasp.

9:00 am

Now that the boys are dropped off and I’m en route to my own school, I can’t decide what to eat (or whether to eat) breakfast because different parts want different foods while other parts choose starvation…all of which is a constant dialogue of voices inside of my head.

10:00am

Therapy time. Different parts inside have different things to say/different agendas, making it difficult for me, “the host,” to talk about anything.

11:00 am

The headaches I experience after therapy make daily living and simple tasks very difficult. Everything is foggy and I don’t know what the day brings.

12:00 pm

I switch from a more energetic and capable identity to a depressed and hopeless identity…I cannot see past the hour and view everything from a different “lens.” Sometimes I switch to an identity that cannot hear any of the other voices inside, and at other times I’m flooded with their opinions.

These switches can happen several times per day depending on how many triggers I’m exposed to.

8:00 pm

Jump forward several hours and I have finally gotten my kids to fall asleep; I can now begin to decompress. Depending on which alter (“personality”) is out, there are many avenues I could go once the kids fall asleep…whether curling up with a stuffed animal and watching a cartoon—the agenda of one of my child alters…or calling up some guy to come keep me company—the agenda of one of my teenage alters…or cleaning, planning for the next day, finishing homework and falling asleep—which is what I, the host, would normally do.

4:00 am

I wake up, panicky, and in pain; bandages covering my forearm. I stumble into the bathroom to check the damage done. I see several cuts that I have zero memory of, I get discouraged, email my therapist in distress, bandage the cuts up as best I can, and try to fall back asleep.

5:00 am

I wasn’t able to fall asleep and instead was thinking heavily about what I would say when people ask about the bandage on my arm. What kind of a mother participates in NSSI (non-suicidal self-injury)? Hating myself. Hating my diagnosis. Hating that I have different parts. Hating that I have no control. Hating that I’m just a shell, and my alters, the ones who were created to protect me from my abuse, control me. And embarrassment covers me like an ice cold blanket because no one knows the constant struggle. Embarrassed because I can’t tell anyone. Depressed because I have to struggle alone again, just like I did throughout my childhood…throughout the childhood abuse and medical issues that caused this disorder.

~

In my compartmentalized mind, there is no room for controversy about DID. Imagine for a moment your own mind being consumed by different octaves of voices…sometimes you’re able to sort the voices, sometimes they are too jumbled and loud to organize, causing severe headaches.

Imagine feeling so sure about your life, getting a 4.0 in your college courses, parenting like a boss, and feeling on top of the world—only to switch moments later to a hopeless, depressed, younger, futureless alter that sees nothing but negative in the world and gets overwhelmed by the simplest of daily tasks.

Imagine being a perfectionist about your appearance and waking up to cuts on your visible forearms—imagine the distress that provokes. The men and women—the doctors—who spend their time and effort getting out their personalized megaphones and telling the world that my struggles (and the struggles of the millions of others diagnosed and undiagnosed DID patients) do not exist…are ill-informed. I would like to see those individuals live a day in our shoes, and then tell me if they “believe” in the validity of the diagnosis.

Maybe then they would write about more pressing issues.

The stigma surrounding mental illness is a major problem; whether it be depression, bipolar disorder, DID, schizophrenia, etc., it is a problem.

Being mentally impaired is tormenting enough, must we make it more difficult by telling people that their invisible struggles aren’t real? I’ve said this before in previous articles, and I’ll say it again; we must have compassion for all in order to live a full life.

For those of you who know me personally and want to know more about my diagnosis I would discourage googling DID and encourage locating the Positive Outcomes For Dissociative Disorders UK website. Not only have they helped me find a community of support, but they have aided the public in providing accurate information about dissociation and the spectrum of dissociative disorders.

The purpose of this article is to inform, to help, and to contribute to the fight against mental health stigma in a bold way. It wasn’t easy to write, but I believe that this is the voice I have worked so hard to gain back.

Mental illness would be easier if it were a broken bone—help would come if I had a broken bone, but because I have a mental illness, help doesn’t come—and I am expected to “suck it up.”

We, as human beings, need to change this way of thinking, and if we work together anything is possible.

 

 

Relephant Reads: 

The Stigma Around Mental Illness is Hurting All of Us.

Mental Illness is an A**hole.

Disordered Behavior & Why It’s No Joke.

The Monsters Lurking Behind 8 Mental Illnesses.

 

 

Author: Jane Hart

Editor: Renée Picard

Photo: via the author 

Reply to nancymeares cancel

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lorien.0113 Jun 17, 2019 11:30pm

oh my goodness thank you so much!!! I can identify with you–finally I have sort of talked with someone with DID. I have been diagnosed with bipolar, schizophrenia ptsd, schizoaffective add and nothing has made sense in my life but now I can see explanations for things that I wasn’t even wondering about! For instance, I understand my no favorite color, and why I have to use the rand function on my calculator to make my decisions about clothes, which simple ADL I’ll try to do first (today’s winner was bathing and washing my hair–This was my goal all day long and now it’s 9:45 and for the third day I haven’t done it yet 🙁 I am pretty new to this but I’ve heard those people arguing in the background my whole life, and the music! –I am still in the stage where I am trying to understand how I can the memories of the wonderful childhood I had not be the real story??? my therapist me that DID does not develop in the childhood that I remember

Ok, I can’t stand it, I have to write! sometimes I can’t even write my name with a pencil and paper. or completely blank out during a piano performance (I got an f) to the point where all I knew was the key it ended on–i have such tugging and interruptions that I forget what the topic of conversation is (As in the first half of my sentence. I get so overwhelmed that I can’t function! Like right now–I am purposely letting go of editing (relearning to type too I used to be a super speller–now I am not sure if the word I want to use is actually a word. This is what happens on these nights What my “angels” have shown me is so horrific that I can’t remember it, just the emotion Ok I want to tell somebody–DID is not something people can see. I asked my trauma specialist (year and a half) if he knows any DID-diagnosed people that would be willing to share their experience of the unexplained dissociation symptoms. I don’t know — apparently “someone” doesn’t want me to write. My husband is my caregiver and we live far out of town in a forest; when he is working I am stuck out here since I don’t drive (yet). We have lived here for five years and we finally know a husband and wife

I wish I could still write well. I’ve tried not to edit this (this has taken me 35 minutes to type :-(((( oh no now I’m not only very depressed, but now my face is growing a beard! 😀 hee hee I needed that. Cant figure out how to end (I wish I could watch your show… Ok bye.

loreilly88

nancymeares Mar 15, 2019 9:19am

You are amazing! So intelligent and brave. I have just now watched The Many Sides of Jane that I had recorded. I too have a mental illness. I have Panic Disorder which is now under control but the condition I have that I identify most with you is Fibromyalgia and it’s a physical disorder not mental. Most people (including doctors) don’t believe it’s real and that we should also “suck it up”and quit faking. Fibromyalgia controls a persons life and a large number of people commit suicide as with DID. Not only are you helping those with mental illnesses by sharing your story but you are also helping those of us who have conditions that others believe are fabricated. Thank you for sharing your parts with us and shining a light on DID and encouraging me to be strong when others don’t believe I have chronic pain and fatigue.

mccraw_dan Jan 23, 2019 8:25pm

Jane, will there be some way we can verify your condition online? The first thing I thought after watching the 1st episode was ( is this real)? That is what went through my mind because during the program it didn’t look real.
I hope you will consider doing something to reassure your viewers what they are watching is not another Hollywood stunt for a tv series.

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Jane Hart

Jane Hart is a mother of two wonderful human beings who keep her hands full. She is fascinated by neuroscience, a lover of yoga, and passionate about helping others. When she isn’t writing, volunteering, or in school, she enjoys being outdoors and soaking up all this world has to offer.