Content warning: Discussions of trauma, self-harm, and abuse.
For much of her life, Anne had no name for what she experienced. There was no diagnosis, or rather, there were many diagnoses, none of which fully explained her reality. Even now, with a clinical understanding of dissociative identity disorder (DID), she struggles to accept it. We wanted to offer a space to share her story and here is what she wanted to say.
Note: Anne will sometimes use the pronoun “We” and refers to her alternative identities as “the guys”.
We were talking the other day with someone about how we managed to cope many years ago when there was no help and no support for people with a diagnosis such as ours. We are not special; we do not stand out in any way, shape, or form, we must survive one day at a time.
There wasn’t even a name for the condition back then, which is not meant to imply that we didn’t have one; instead, it was not recognised at the time. We have had many diagnoses, just not one that made any sense. Even now our current one doesn’t make any sense to us. Most of the time, we are reluctant even to mention it or talk about it, as we struggle to accept it.
There is a split in the medical arena as to whether the condition even exists. Most reading this may be familiar with the term Multiple Personality Disorder. It is now known as DID, or Dissociative Identity Disorder, and we who have this diagnosis can somewhat accept it on an intellectual level but are just as hesitant as others are to believe that we have this highly sensationalised condition.
We struggled to decide whether we wanted to share this diagnosis on this platform. Still, we thought about the “bad wrap” that this controversial illness has attracted, primarily because of a lack of education or ignorance about the condition.
DID usually manifests itself due to childhood trauma of one kind or another, and it is my understanding that alters, or other identities, are subconsciously formed to “protect” or in some way prevent the person from experiencing the events of the abuse over time. The person who has experienced the trauma is usually called the host, and the different identities that arise from the trauma may each have their own name, sex and age, and for the most part allow the person to survive and function through life.
I don’t know how many identities I have, and I don’t sit around counting them. They are the “guys,” and while there are a few of them, each serves a specific function. Most of us are protectors, helping to preserve Anne’s day-to-day functioning. Some identities are angry at Anne and want to harm her. They feel she is responsible for the abuse as well as anything that goes wrong in her life. There are young identities that are often engaging, and a few teenage ones who get up to all the “mischief” of normal teenagers.
We can look at the funny side of some of the sabotaging behaviours that confront Anne daily. Anne does not wear much makeup, so when one of her supporters opened a drawer and found it full of cosmetics, the only conclusion was that the guys had somehow purchased it and hid it. The same applies when both a red and a black pair of skimpy lacy underwear were found one day, nothing like what she would wear.
One of their not-so-funny endeavours occurred with her studies, when someone would either delete her assignments or submit them half completed. We are thankful for Lisa’s assistance with other issues, such as when they purchase items they shouldn’t and when this has happened.
Lisa is Anne’s Support Coordinator.
We’ve always known that something was wrong, as a child we would get severe headaches, which would cause us to hold our hands to our head. Our parents took us to a psychiatric hospital, and we remembered her father saying that he would leave us there if we didn’t start to behave. A few people were walking the corridors and screaming out. We were terrified. Somehow, we made it through high school and then into nursing.
We were not free from whatever was wrong, but our situation worsened after we got married. It was an abusive marriage that exacerbated whatever was wrong. However, it was not until the 90’s that a psychiatrist was able to make the diagnosis of multiple personality disorder.
We thought he was joking and didn’t believe him. It was also around this time, though, that some of the angry ones started to become violent towards me. They were now “found out” and didn’t like it. They were never violent towards anyone else, but the violence towards me was devastating and life-threatening. On one occasion, the protector parts must have called an ambulance, and we were rushed to the hospital with a gunshot wound. It didn’t come out for years that one of the angry ones had done this. The job of the protectors is to help care for the young ones and to try to minimise the suffering of Anne.
Multiple Personality evolved into DID. Among the guys we have, we have individuals who range in age from approximately 2 to 50 years old. We can admit that now, but there were times when we would have either watched or read something about DID that would call the diagnosis into question. That would again cause us some anxiety, and we would deny the diagnosis. However, it has been written up in the DSM-5 as a stand-alone diagnosis, and we know that to keep vacillating between yes, we have it, and no, we don’t makes it that more difficult for those who do suffer from it not to be diminished.
Our days are regimented with routine, as the guys can come and go throughout the day, causing chaos that can lead to severe panic attacks. Our life has been fraught with continuous trauma, which has also led to PTSD and OCD. However, because of the support offered through Inclusion Tree for the NDIS, we are now able to receive psychological assistance from someone who knows about DID. We still do not totally accept the diagnosis, and my psychologist has a “fit” whenever we tell her that we feel like a fraud. She tells me that we set ourselves back years when we do that.
Before Inclusion Tree and the NDIS, although we were able to function independently to a degree, our lives were chaotic. We recall that on six occasions, we requested that the locks to our unit be changed. We were certain that someone had gained access during the night and had eaten all our food, switched on the TV, and made a mess of the lounge room. This happened when we were working at Westmead and were living in the staff residence.
Studying was a nightmare as some alters would sabotage our assignments, delete all the hard work, or mess around with the computer. We have devised a way to circumvent some of this impairment by doing some of our work, saving it, and then sharing it with others to ensure a copy still existed, which helped to lessen the likelihood of tampering. Lisa has also helped me with identifying transaction in my bank accounts, as difficult alters will sometimes use the card and make purchases without me knowing.
Routine and order are essential. We have a designated space for almost everything, and items must be returned to their original location. There are specific tasks that must be completed at specified times during the day. If not, a panic attack will ensue, and that leads to an alter who handles those episodes to take over, bringing actual physical pain for a time.
I have asked my daughter, now that she understands, if there were any indications of my condition as she was growing up. She has told me that the diagnosis has certainly explained a few things for her. When she recalls instances when what we did seemed so out of character for us, she can now understand. However, she also states that she has always felt safe with us, which brings us a sense of comfort.
We do find it difficult talking about this disorder; however, had it not been for the bravery of another person with DID, we probably would never have disclosed our diagnosis. This occurred during a training session on Mental Health Advocacy. There was a well-known Advocate who was speaking about her own diagnosis of DID. We had never heard of anyone speaking so freely about things that happened to us as well. We were initially shocked to hear that someone else exhibited some of the behaviours we experienced.
It all seems so scary and impossible when we write this, but if revealing some of our experiences can strike a chord with just one other person surviving this diagnosis. To let them know that it is okay to come forward and get help through the NDIS or Inclusion Tree then my goal of reaching out has been achieved.
You may be at a place where you have compartmentalised your life so you can function. I know that place. You may not think that help is available in the field of psychology, or you may feel shame or guilt; I have been there, too. I also have support workers, as I have physical disabilities as well. It wasn’t easy when we first hired them and had to explain a little about our diagnosis.
It is to their credit that they have accepted us and made no judgments against us. Some I have had for eight years now. They can recall some occasions that we now laugh at, such as when one of the angry males wanted to throw our bag out the window of a moving car.
This diagnosis is in many ways an actual disability that interferes with people’s ability to live and function. I have support for a psychologist, but no support for a psychiatrist who must prescribe and write scripts for psychiatric medications. The NDIS needs to address this disparity adequately.
In closing, we realise that we have only just scratched the surface of what it is like to live with DID, so let us pose a question. How do you, as a reader, sit with this information?
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