27 Things People With Dissociative Identity Disorder Really Want You To Know

Recently, we asked members of the BuzzFeed Community to share their experiences with dissociative identity disorder.

Here, we've included their anonymous experiences as well as input from Dr. Roberto Lewis-Fernández, professor of clinical psychiatry at Columbia College of Physicians and Surgeons. Together, this should give you a better picture of what life is really like with dissociative identity disorder.

The general understanding of DID, is that it typically starts in childhood, as people's cognitive functions, sense of identity, and personality are naturally forming, Lewis-Fernández says. The fragmentation symptoms of DID supposedly function as a coping mechanism for serious traumatic experiences that the person was subjected to, like being physically beaten, verbally abused, or sexually assaulted.

"I wish people knew that DID is caused by child abuse and childhood trauma. People always assume we're dangerous and potential murderers, but don't realize that we are all, on the inside, traumatized children. We, as a child, couldn't properly process or handle the horrific things that were happening to us. So we developed different 'parts' to be able to contain those memories of abuse or the strong emotions experienced in reaction to the trauma."

—23/Male

"I have gone by a name for 15 years that is more of a group identity. Because they are all me, and I am all of my selves (my alters)."

—30/Female

"We do not care for the term alter. So I say 'parts' because they are indeed a part of me. When referring to myself as 'we,' or when I reference 'them,' it sometimes makes people feel uncomfortable. Unfortunately, that's not my problem. That's something they need to sort out. People always fear what they don't understand."

—30/Female

"Some of my alters have abilities that others don't. Some can sing, play guitar, or draw, and the others can't. Some have the same likes and dislikes; some have wildly different ones. They all have a full range of emotions. Lots of people like to say I'm just moody or 'bipolar,' but every alter is a full person with their own emotions and reactions to things. They all have different handwriting, and some have different voices or ways of speaking. No, they are not just my different moods. DID is different from bipolar disorder. "

—30/Female

"I experience pretty disturbing symptoms when I switch to an alter that's like a version of my 'younger self.' I usually only experience the younger self when I am processing traumatic events in therapy, but it really scares me and makes me feel out of control. When I'm in a younger-self state, I have trouble getting my words out and I'll talk like a child, even though I am still myself and have my adult thoughts. Whatever I'm processing at the time has triggered a need for my younger self to speak and work through things; it's hard to experience."

—21/Female

There's a lot that's unknown or not yet understood about DID, in part because it's not the main area of study for most psychiatrists, Lewis-Fernández says. Still, there is a small but dedicated group of researchers who are involved in studying it, and through them, new information is coming out all the time.

"I wish for a better general understanding of the disorder, both medically and generally. I've had DID all my life, but only discovered what was wrong with me five years ago. It's hard to open up about having DID because we tend to get a lot more disbelief, accusations, and shaming, than when people with more 'socially acceptable' disorders talk about their experiences. There should be more awareness on this topic and the medical community needs to wake up and understand that there are thousands of us out there who need help."

—52/Female

It's hard to diagnose DID because it involves hidden internal symptoms, Lewis-Fernández says. The person has to be able to explain their memory loss and how they understand themselves, which can be hard in general for children, but especially hard when some identities don't know the others exist.

"Having a condition that you're unaware of, and having nobody believe you or try to help you, is pretty damaging. It can be messy, stressful, and terrifying if you're not aware that you live with DID. I went to countless doctors trying to figure out what the hell was happening to me. I would 'wake up' in random places and states (yes, geographically different states hundreds of miles away). I fully expected a doctor to one day tell me I had some inoperable brain tumor and had a certain amount of time left to live. Instead, I was diagnosed with DID."

—43/Female

"Because DID is not as researched as other psychiatric disorders, it's not the first mental illness on a doctor's mind when a patient comes in for diagnosis," Lewis-Fernández says. "In many cases, not only are the symptoms subtle, but there's usually amnesia involved so people don't always remember their symptoms."

Also, a lot of the symptoms can be attributed to other mental illnesses, such as stress, anxiety, depression, he says. And as for hearing internal voices, he explains that those can be attributed to schizophrenia or a psychotic disorder. It's a hard diagnosis to make, and that's why so many people with DID will have up to seven or eight misdiagnoses before getting the accurate one, he says.

"I've been through a lot of diagnoses; schizophrenia, schizoaffective disorder, bipolar I, and more. Some professionals don't even agree that this condition exists. This has made my recovery even longer and more meandering."

—23/Female

"According to the DSM, in order to be diagnosed with DID, the patient has to experience the element of amnesia," Lewis-Fernández says. "At least one identity must not be aware of the other identities, or that identity experiences memory loss when they aren't the identity that's 'out,' or in control."

"I spent years waking up in places I didn't remember. I'd get on the bus home and end up halfway across the city. Most people in my life just think I have a poor memory and do not know I actually disassociate throughout the day. I begged and pleaded with doctors to tell me why I couldn't remember what seemed like half my life."

—25/Female

"I was transitioning uncontrollably in my youth, so I barely have any memories of that time. It's incredibly uncomfortable to see a family photo of your body having a wonderful time in some situation (theme park, first day of school, etc.) that you have absolutely no recollection of ever happening. My mother particularly struggles with why I don't want to look at family photos with her, I don't know how to explain it in a way she'll understand."

—25/Male

"The closest thing I can relate it to is an out-of-body experience. I don't feel anything, I don't react correctly. It's like I'm watching a version of myself. Watching a video where someone is acting, and they're playing a part of me. It's not me. It's just my body on autopilot."

—19/Female

"We often explain to people that it's like you're driving a car, and then without any warning your seat swivels to the back and someone else's shifts to the front, controlling the car — the car being your body in this analogy. Sometimes it feels like you're in the back seat; sometimes it feels like you're tossed all the way in the trunk."

—30/Female

"Sometimes, several will be present, either fighting for dominance, or discussing how to handle the situation at hand. You may hear three contradictory sentences come out of my/our mouth, one after the other, because three of my alters had three different opinions. It's annoying, embarrassing, and very hard to control."

—30/Female

"One really bubbly alter actually takes control for most of the week since I can't really handle working full time. She even takes care of public speaking stuff because she loves it so much. My more ~aggressive alter~ is actually the most patient and would never hurt anyone. He developed due to some horrific things that happened to us over a few years, and actually only pops out to snap at people and put a foot down when they violate my boundaries or those of a loved one. The other two are ~the chill ones~ who can handle stressful situations with no issues. And then there's the one that cries over anything and everything, who isn't quite good at much. But we love her anyway.

They're actually all very interesting and lovely, and 99% of the time no one can tell who is out. It can be hectic when full swaps happen, and we all have slightly different hobbies, so sometimes it's hard to keep up with everything. But all in all it's not too bad."

—23/Male

"DID is trauma related, so like with post-traumatic stress disorder (PTSD), I have to be prepared to handle triggers. Small things can cause a 'switch' in alters — a man catcalling me, my boyfriend hugging me when I wasn't prepared, giving a speech in class, having a difficult customer at work, etc."

—23/Female

"The worst part about living with DID is that I know exactly what triggers me, but in trying to live a normal life, I can't avoid them. For instance, I have to go into work every day wondering if today is the day I get fired. If someone uses the wrong phrase to greet me, or they touch me in the wrong way, or they look, sound, or smell even remotely like one of my abusers, then I can dissociate and switch to my 4-year-old alter for hours, wandering into the streets, shoplifting from stores, etc. I failed out of school and lost my last job because of this, and now I work in fast food, where I see and speak to hundreds of people a day. So we'll see how long that lasts."

—20/Female

"DID is meant to be a hidden disorder — and it is for a majority of diagnosed individuals — that's developed to help protect you from the source of the trauma you experienced. It's not always obvious when a switch occurs. Some alters won't announce a switch unless they're comfortable around the person they're with. A lot of the time, part of an alter's ~job~ is to pass as the host, answering to their name, attempting to be as much like them as they can to avoid detection."

—27/Female

Many patients with DID may develop conditions associated with trauma, as well as trauma-based conditions, such as PTSD, depression, anxiety, substance abuse, and borderline personality disorder (BPD), Lewis-Fernández says.

"I suffered from alcoholism, self-harm, eating disorders, and drug abuse as ways to cope with the confusion and stress brought on by DID. I even spent a month in residential treatment for dissociation, eating disorder not otherwise specified (EDNOS), and opiate addiction. I still have severe depression and anxiety, which affects my everyday life."

—23/Female

"There is no medication strictly for DID and the switching between alters. However, medications like antidepressants, antipsychotics, and tranquilizers, are useful when it comes to treating the anxiety, depression, suicidal thoughts, etc. that we can experience."

—52/Female

"I've been in therapy for eight years; working on dialectical behavioral therapy and eye movement desensitization and reprocessing. I've also been opiate free for almost five years. It's hard work and ridiculously expensive, but it's all worth it!"

—23/Female

"Therapy for DID is a long haul and the main goal isn't always the 'integration or fusion of all alters into one person.' A lot of the time, people opt for working toward a place where all their alters can function harmoniously together — a place where all the alters aren't constantly fighting for control."

—27/Female

"Every day is an adventure. It's a disorder that makes you feel isolated and confused. Different alters like different things and they want different things. They have different talents and passions. We have to work to find a happy medium, something that makes the entire system happy, instead of just focusing on one person's hopes and dreams in life."

—24/Nonconforming

"My DID was an automatic response to trauma. It saved me. It doesn't make me dangerous. My parts are useful, and I don't want to get rid of them — just work with them. Trying to understand me, as well as the complex nature of DID, is impossible, and I don't expect you to. But believing me, and accepting that what's going on is real, is key."

—33/Female

"I've had the same awesome job for three years, an incredible group of helpful friends who love and understand me, and an amazing, supportive partner who has learned to love my alters. I'm able to notice my triggers and deal with the effects of a switch, and all of my alter states are on the same page of completing my goals and getting through the day safely."

—23/Female