Approximately 1 in 5 adults in the U.S. – 43.8 million, or 18.5% – experiences mental illness in a given year. Nonetheless, mental health issues are still often either scandalized or turned into a taboo subject. For Mental Health Awareness Month, EXPOSING THE TRUTH lets people affected by mental illnesses speak for themselves in an interview series published throughout April and May 2016. So far, I already spoke to John* about his schizophrenia, Anne opened up to me about her eating disorder, and Nicole shared her experiences with generalized anxiety disorder with me.
In part four of our series, I speak with Matthew* who lives with a dissociative identity disorder since he was a little child – by the way he was also the one who provided and drew all the pictures featured in this blog post. Due to the complexity of the condition, I have to admit that it was and still is hard for me to understand how it must feel if you don’t only have to deal with one sad, happy, tired, nervous, or moody voice inside of your head, but have to coordinate and cope with 20, 40 or 50 people, or even a small village inside of you.
What Exactly is Dissociative Identity Disorder?
While most people can’t imagine more than one identity living within the same person, that is what is going on when you live with dissociative identity disorder (DID): people with DID do not live with only one, but multiple personality states which are called “alters”. According to the DSM-5 criteria for DID, these alters must each have their own enduring pattern of perceiving, relating to and thinking about the environment and self, and can have different physical effects, accents, memories, ages, names, functions, genders and other traits. Collectively, all the alters together are known as a “system”. Also, people with alters often refer to themselves as “we” due to the multiple alters within the single person.
Dissociative identity disorder affects around 1 to 3% of the population in the USA. It used to be called Multiple Personality Disorder and is classified as a dissociative disorder, not a personality disorder in the ICD-10 classification of mental and behavioral disorders. Most people with dissociative identity disorder have a mix of dissociative and posttraumatic symptoms as well as non-trauma related symptoms which may include:
- Different personalities, each with a constant performance
- Inability to remember large parts of childhood
- Frequent bouts of memory loss
- Sudden return of memories, as in a flashback and/or flashback to traumatic events
- Episodes of feeling disconnected or detached from one’s body and thoughts
- Out of body experiences
- Suicide attempts or self-injury
- Differences in handwriting
- Allergies which appear or disappear related to which personality shows up
- Somatoform disorders/convulsions related to single personalities
- Depression or mood swings
- Anxiety, nervousness, panic attacks
- Eating disorders
- Sleep problems
- Severe headaches or pain
- Sexual dysfunction, including sexual addiction and avoidance
Thank you for taking the time to talk to me today, Matthew! How would you describe dissociative identity disorder to someone who has never heard of it before?
To put it simply, dissociative identity disorder means that one brain and one body contains a number of personalities – we call them alters – that can totally differ from each other and perceive themselves as independent persons. In more complex terms: if a multiple personality disorder, or dissociative identity disorder how it is called today, manifests itself, it means that a little child has experienced a lot of violence and therefore separates its different lives from each other. It goes to kindergarten or to school like any other child – and then there is also this parallel life in which it is abused and experiences sexualized violence again and again.
And because those two different lives cannot be brought together, because its feeling of self, the identity of the child, isn’t stable yet, it starts saving its memories in different folders. This means the child will have one folder for its everyday experiences and another one for its violent experiences, and if the abusive experiences start adding up, another folder to store all those new violent experiences will be created until different alters with an own sense of self-start to develop.
Metaphorically speaking, the memory of a person with dissociative identity disorder resembles a computer which is used by different persons with different user accounts. Every user can save data on their own drive, but there are also data that are saved in a shared drive which is accessible by every user. In my case this means that there are things that almost every one of us is capable of doing, even though only one person has learned those things. Most of us can read for example, even though only one of us went to school. But there are also things that only single alters can do.
Maybe the readers would like to take a second and think about their own sense of self. I am sure they will see that their identities are defined by a whole lot of memories und experiences. And if different memories which cannot be reconciled are made, it is the perfect basis for different alters to develop. Some are loud, some are quiet, some are shy. There are angry ones, some are really tender and sad, some are outgoing and energetic. All those alters share one body.
In the media, schizophrenia and dissociative identity disorder are often confused with each other. There are many people who don’t know anything about DID, and if you explain it to them they will say something like: “Oh, I thought that’s what schizophrenia is…”. Do you have any idea why those two diagnoses are so often mixed up?
Schizophrenia and dissociative identity disorder really don’t have that much in common, but I guess they both are often confused with each other, because schizophrenia translates as “split soul”, meaning that the borders between what is outside and what is inside your own head dissolve. To people who are many – a term which people with dissociative identity disorder prefer to be called by the way – it is very clear what happens outside and what is going on inside of their heads, but on the inside there are different things going on, depending who is there at the moment.
Alright, enough with the general questions. If it is okay with you, I would like to ask you some personal questions now. How and at which age did you first realize that your personality differs from that of others?
That depends on who of us you ask [laughs].
Well, who is speaking now?
Matt. I knew it very early that there was something different with me, and I found it rather funny that other people don’t have others inside of their head causing them to have memory lapses and so on. Some of us noticed that something was different earlier than others… And when I say “us” I mean: “All personalities who live in this body and that I know”.
Are there alters who have different roles in your everyday life?
Yes, of course. There are some alters who can do certain things better than others. There are some who are extremely traumatized, for this reason are afraid of everything, and can’t deal with people very well. Naturally, it is better if those alters don’t go to work. I, for example, am very good in dealing with others – I like talking with other people. But there are also some who don’t like doing that at all and prefer to hide away from others and to write texts… Some like animals, some don’t. The skills and preferences of the alters are very different.
Are there different age groups and different genders?
Definitely. There are women, and men, and trans-persons. There are also alters who don’t care about that and who say about themselves that they rather have a function than a gender. There are alters who are still little – many of those have developed in the course of traumatization. Some of those start to grow a little bit older as they notice some things going on the here and now. Others decide that they want to remain young. And there are of course also alters who are older than the body.
Is there something like a controlled switching between the alters?
Yes, we can do that, but it takes a bit of practice – to be able to do this depends on how well you know each other. You first have to get to know the others, which is something you can learn but takes its time. Imagine you are part of a group which is to deliver a speech in front of a room full of people. You would have to plan beforehand who of you will deliver which part of the speech. That’s something that can be a bit stressful from time to time, but it is definitely possible.
What would happen if you were in a really stressful situation? Could this cause a switch between alters that cannot be controlled by you?
That depends. We have a lot of practice in controlled switching, but let’s just assume that I would witness a horrible accident after we’ve finished this interview and leave this room. I would automatically make room for someone who has better first aid skills than I have. I wouldn’t do this. I would maybe come back later to help calm other people who might have also witnessed the accident down. Even though it happens fast, this is also a form of controlled switching. But then there’s also the possibility that switching happens on its own, automatically.
There are two good reasons for “being many”. One, to protect a child from its awful memories during its everyday life when it goes to school and so on. The phenomenon that horrible memories are stored somewhere in the back of your brain is well-known to everyone who has ever been involved in a car accident or who has experienced sexualized violence as an adult. The other reason why a person becomes “many” is when the switching between the different alters becomes so well-practiced that you start doing it automatically, adapting to situations like a chameleon. This means the small child won’t be able to control the switching, and – depending on the context – it will switch automatically to the alter who is best equipped to handle the current situation. Let me give you an example: The child is doing its homework in the afternoon. Suddenly, the mother who abuses the child on a regular basis enters the room. The child will then automatically switch to the alter who has the best abilities to survive the abuse. This is a mechanism that still works in different contexts for me today.
Alright, so on the one hand, we have the controlled switching and on the other a switching which is more of an automatized coping mechanism in emergencies. How did you learn to switch controlled between the alters?
To do so, learning to communicate with each other was essential. Some alters were able to do so for a long time, others first had to learn to listen to the others and acknowledge their presence. And if you manage that, then arrangements are possible, maybe through a calendar or a diary first, and later on it might be possible to communicate with each other “inside the head”.
Which part does therapy play in this process?
Therapy can be very helpful in this regard, especially if one of the alters doesn’t want to admit that they have memory lapses or if one of the others doesn’t want to see that there are other alters beside of them. Of course, experiencing that you are not the only one inside your own head is a huge shock if you have previously thought that you are on your own. Especially if you then realize that you don’t even like the other alters that are there, if a alter who is very quiet and peaceful has lived the everyday life for a long time and then has to realize that they now also have to live with a brutal bully inside of their head. To accept that one of the systems might be very brutal, judgmental, and mean is a process that takes time and effort. In those cases, therapy can help.
But I have to say: therapy is a good thing, but it’s not everything. There are for example great self-help groups. And you have to remember that you are the one who does most of the work. That means besides this one hour that people spend on going to therapy each week, there is still a whole lot of work that you have to do on your own.
Do you want to tell me how long you have received therapy so far?
I have been in therapy for seven years now, but during the first years I was misdiagnosed and therefore received the wrong treatment. Unfortunately, this is something that happens to many people who are many. They get treatment for paranoid schizophrenia or are “only” diagnosed as depressive or with borderline personality disorder – which is a very popular misdiagnosis. Or only the posttraumatic symptoms are taken into account and people who are many consequently are diagnosed with posttraumatic stress disorder. For me, it took some time until I told someone about it, then some time went by until I found a therapist who understood my condition and finally it again took time and effort to find someone who wanted to treat me. There are therapists who don’t want to work with people who are many because it’s similar to doing group therapy with a single person. I would like to advertise people who are many: we are very interesting clients [laughs].
You just mentioned that you were misdiagnosed., and there seem to be many parallels to other mental illnesses. Are there any symptoms which are specific to dissociative identity disorder?
One of the specifics of dissociative identity disorder is that the different alters are at least partially amnestic towards each other. This means that they will always miss some bits and pieces of each other, even though they don’t want to. This manifests itself in memory lapses. And of course single alters can also become mentally or physically ill. One alter who is responsible for managing everyday routines might suffer from amnesia that much that they become depressive. Another one might have made almost exclusively really shitty experiences, and for this reason, might eventually have developed borderline personality disorder. Alters might suffer from an eating disorder, or might even seem psychotic. Anything is possible. So you have to get to know each other, you have to learn to live with each other, talk to each other. And it doesn’t get easier if there are alters with mental health issues.
Is there any prescription medication that is used specifically for the treatment of dissociative identity disorder?
No, there is none. What is often problematic for patients with dissociative identity disorder is that the alters might react differently to a specific medication. To be more specific that means that there are some alters who can handle to take a lot of Diazepam*, and feel energized by it. This is called a paradox reaction. Then there are some alters who instantly fall asleep if they take this kind of medication, and others who would never – under any circumstances – take it.
I think I can already tell, but what is your standpoint on the treatment of dissociative identity disorder as it is today? Is there any need for improvement?
A whole lot needs to improve in this regard. I think it is absolutely necessary that psychiatrists start to talk much more openly about the side effects of prescribed medication with their patients. Also, blood values need to be controlled on a much more regular basis. It becomes a standard that liver values aren’t controlled anymore, so no one really knows how the patient handles their prescribed medication. Also, people get prescriptions for high doses of addictive opioids as everyday medication which should be used for emergencies only.
… You already mentioned Diazepam.
Yes, amongst others. This happens a lot if anything else fails. It is highly addictive and has terrible side effects. Therefore, it is necessary to improve education about side effects and possible consequences of long-term use of psychiatric drugs. Also, we don’t have enough therapists in general, especially therapists specialized in trauma therapy. Plus, we need more therapists who are willing to work with people who are many and an elongated duration of therapy, because two or three years are not sufficient in this case. At the moment, health insurance companies in Germany do no pay enough… Shout out to the Phoenix Initiative which put together and published a nice list of demands for the therapy of people who are many and others. If you imagine that there are 20, 30 or even 100 people who have to get connected to each other in the first place, then this takes a lot more than a single therapy which isn’t mostly even sufficient for a person who is not many.
Speaking of not being many: can you imagine how life would be if you were only “with yourself”? If there were only Matthew and no one else?
Not at all. And most of the others cannot imagine that as well. We are used to the way it is, have lived this way ever since we can remember, and we wouldn’t want it any other way. What has the most negative consequences on us is something that isn’t specific to dissociative identity disorder, but rather the typical posttraumatic symptoms such as flashbacks, and nightmares. There are horrible memories that we have to live with. But those are the exact same problems that are also known to people who suffer from PTSD and are alone in their own head.
* Not his real name.
* Not his real name.
*Diazepam, first marketed as Valium. A benzodiazepine that typically produces a calming effect, and is used to treat a range of conditions including anxiety, alcohol withdrawal syndrome, muscle spasms, seizures, trouble sleeping, and restless legs syndrome.