Dissociative identity disorder: “My diagnosis scares people”
After experiencing a series of traumatic events in her childhood, Martina Neuhaus* developed a dissociative identity disorder (DID). An insight into her life and the everyday challenges of living with more than 20 different personalities.
“Most people have the totally wrong idea of what a dissociative identity disorder (DID) is. They think of melodramatic Hollywood films or sensationalistic media reports and believe that people with multiple personalities switch between different voices, call themselves different names or even pose a threat to those around them. In fact, the opposite is true. Neither my friends nor family noticed what was wrong with me. They only saw bright and bubbly Martina* and thought I was doing well.
But I’d known for a long time that something wasn’t right. At first, it was the extreme bouts of insomnia. For months on end, I didn’t get more than three hours’ sleep a night, and sometimes none at all. The doctors didn’t believe me. They said that if I was really getting such little sleep, I wouldn't be able to stand in front of them. As well as insomnia, I was having strange episodes – the best way I can describe them is as if I was suffering extreme panic attacks. And then I was also experiencing moments when I felt as if I was observing what I was doing from the back of my mind but couldn’t actively intervene any more. I was terrified by these episodes. After a long road of suffering and repeated misdiagnoses, doctors eventually diagnosed a dissociative identity disorder – or what used to be called a multiple personality disorder.
Identifying personalities takes a lot of energy
With the help of my therapists and my husband, I’ve been able to form a connection with some of my different personalities. There are the free-spirited personalities, for example, who feel happiest when they’re racing down the mountain on a snowboard. There are the childlike parts who are scared of the dark, eat sweets and make up fantasy stories. And there are the protective personalities who make sure I don’t stand out in public. I’ve now identified that I have more than 20 distinct personalities. There are probably even more but it takes a lot of energy to go through the long and difficult process of distinguishing them all from one another and giving them a name.
And here I am: Martina. I’m 37 years old, married, and I live in an apartment in the countryside that I’ve spent the last few years redecorating into my own safe haven. I enjoy reading and doing sports. I’m the face that people recognise when they think of Martina. I laugh and smile a lot – sometimes because that’s how I’m really feeling, and sometimes so that nobody notices anything’s up. I try my very best to make sure that people can’t really see what’s happening inside me because they just wouldn’t understand.
DID sufferers are scared to talk openly about it
I tried. I told a few close friends and family that I’d been diagnosed with a dissociative identity disorder. Some of them laughed and said, “You? No way, Martina! We don’t see anything wrong with you.” Sadly, even many doctors doubt the diagnosis because they’ve hardly ever come across patients with a dissociative identity disorder before. It makes me think that they wouldn’t have found anything wrong with me if I hadn’t spoken up about it. That’s the problem: many more people suffer from DID than you would imagine, but most of them don’t talk about it or don’t know themselves what’s wrong because they’ve been misdiagnosed. My life would be much easier if I could talk openly about what I experience, but people are scared by my diagnosis.
That causes me to lead a withdrawn life. I had to give up my job and break off the studies that I’d started a few years before. My day is planned down to the last detail. Even apparently simple acts like eating require a lot of strength, because I have to cater to all my different personalities. For example, I usually eat small portions of lots of different foods so that all the different parts of me are satisfied. I eat sweets often at weekends so that my childlike personalities get the attention they need.
Everyday triggers are the real problem
The evening hours belong to my different personalities. Because I can’t talk to them directly, my husband does it for me. He has conversations with them and asks them questions that I’d like to ask my other personalities. A lot of trust is required before one of my personalities takes over my brain’s speech centre. When it does happen, my husband told me that my voice changes – for example, becoming more childlike – and that my personalities use words I’d never use.
The biggest difficulty I face in everyday life are the many triggers that occur. All it takes is a smell to trigger a bad episode in one of my personalities. What happens next changes from one episode to the other. Sometimes I feel an unbearable panic, sometimes I just completely freeze, or sometimes I seize up so badly that it seems as if I’m having an epileptic fit. These are the things that scare me more than anything because I can’t control them and I’m ashamed when they happen in front of other people.
Dissociation is not something to be ashamed of. In fact, it’s a hugely impressive technique used by our brain to cope with traumatic experiences. In layman’s terms, when a trauma is so horrific that the victim needs to be protected from the memory, their suffering is dispersed across different parts of their brain to enable them to endure the incredible psychological and physical suffering they’ve experienced. On account of the traumatic experiences, these distinct areas of the brain develop separately from one another in such a way that distinct personalities emerge with their own preferences, experiences, desires and needs. I don’t want to talk about the reason why my brain was forced to react the way it did during my childhood. Actually, I don’t even remember what happened to me. I can’t yet access the memories of those personalities that can recall the trauma.
Dissociative identity disorder is a diagnosis and therefore categorised as an illness. I see it differently. My brain functions a bit differently to most other brains. For me, the personalities in themselves are not what makes me feel as if I’m ill. My different personalities are suffering from the symptoms of a complex post-traumatic stress disorder (PTSD). And it’s the PTSD that induces all these symptoms of stress in response to various triggers. That’s also why the therapeutic goal is not primarily to integrate the different personalities. Instead, the therapy focuses on processing the traumas that the individual personalities have experienced in the hope that one day they’ll be freed from their PTSD symptoms and will then be able to form connections and work cooperatively with each other. If I ever get to that stage, I don’t know if I’d even want my different identities to form a single whole. I don’t want to lose the diversity, the abilities and the characteristics that my different personalities bring. After all, these personalities have all emerged from the same host and I can only be who I am if they can be too.”