An edited version of this article is included in a post for therapists published on the same day.
Living with DID by Michaela
There has over the last 2 years been a massive improvement in what use to be the hardest part of living with DID. I use to become very confused and disorientated on certain days of the year where my abuse was significantly worse. On these dates I would regress to an earlier age and I would remember nothing of my life today. I wouldn’t remember who friends and supporters are, where I live etc and felt compounded to contact my abusers and even travelled home to them. This was easily done before I moved to my current home. The distance from family members would make it very difficult to travel back now.
During these times the petals[i] had the huge responsibility of doing what they were created to do and that was to keep me safe. They had to make sure I didn’t leave the flat by making sure all keys, money etc was hidden. People involved in my care had to make sure they didn’t tell me my address etc so that I couldn’t give this away to my abusers. This seems to happen less and less now. It does still happen but usually because of stress and upset. I am so glad that I no longer become as confused as I use to and I will be forever grateful to the petals and other people involved in my care for ensuring my safety at these difficult times.
The dates are extremely difficult nonetheless. When I was confused I didn’t really remember what went on on these days whereas I now have to live with the painful memories these dates bring. The dates are no longer controlled by my past abuse or abusers though. On the most significant of dates I use direct payments to go away on walking holidays. This means I am with other people so I am accounted for but I can now make new associations with the dates and not have to have them so dominated by my past. This allows some distance between what happened on those dates and what I choose to happen now. I am more confident I can deal with the dates and now make them what we want them to be. That takes the power away from abusers and gives it back to me. Even if I am too upset on the day to do anything I am still in a better position because I am deep down safe.
Finding my confidence
I am more confident than I used to be and even though someone usually knows where I am it’s more out of habit then feeling like I need to be accounted for. My life I can’t say is easy but looking back to what it was 5 years ago it is very different. I have loyal friends who have stuck by me and who will always mean a lot to me. The ones that I have lost in a way shouldn’t have been there to start with. I am more trusting that I used to be and although this can cause problems it has usually meant I have met people who are caring and compassionate and have supported me through thick and thin. I am fitter and healthier than I once was and although I am constantly trying to lose weight I am pleased that I am fitter than people who are younger than myself. I have proved to many that just because someone is overweight it doesn’t mean they are not fit and in a way physical fitness is more important than physical size. I am as stubborn as ever and although this is something that drives others mad at times I know it is a quality I will not change.
I have tried many new activities in life, some I have continued and some I have had to give up because of back problems. I am very determined and have over the years proved many people wrong. I guess at the end of the day that is what you get if you are stupid enough to form judgments of me. I am proud to live with my other personalities, as without them I wouldn’t be the person I am. Together we have lived through so much and when other people let me down I always have the petals to fall back on.
Hard work paying off
I do not see the DID as a disorder at all. I would not view other people who have DID as disordered either. I often wonder just where I would be if I didn’t have the DID and I can honestly say I probably wouldn’t even be alive. DID for many is a way of life and each and every person’s way of life is unique to them. As long as I am not hurting another person than I shouldn’t feel like I have to change, and I only change if I want to. My biggest achievement in life is becoming safe and free from abuse. It may have taken me 11 years but I am so glad I put the effort and hard work in. It has worked out to be worth it. I may not have a degree or a career as of yet but I have survived against all odds and to me that is more important than any certificate or title of any kind.
Living well is the best revenge
I like to think that deep down my abusers know what they have done is wrong and have to live with knowing what they have done is wrong. This would just be a small mercy really as I feel they deserve to be punished. I have in the past tried to press charges against my parents at least. The CPS wouldn’t take the case on. They decided that my mental health problems meant the court case would not be in my best interest. A case of this nature would be difficult for anyone but because I have a disorder that is a direct result of my abuse there will never be any justice. All I can say is living well is the best revenge. My parents would hate for me to rebuild my life and although it is never the life I should have had I can only make it the best it can be. They destroyed 29 years of my life and do not deserve the power to continue to destroy it any further. Like me they have to live with the past and while I did nothing wrong, a walk down memory lane would be very different for them. I can honestly say I hope they are tortured by their memories and actions towards me and one day do the decent thing and hand themselves in to the police. Even then to make their suffering worse I wouldn’t forgive them as I do believe there are some things that don’t deserve forgiveness. Everyone has a memory and everyone who has hurt me or betrayed me over the years will have to one day face their own memories.
Towards diagnosis; struggling as a child
I was diagnosed with DID when I was 22 years old after a stay in a psychiatric hospital. Even before I received my diagnosis I always knew from a young age that I was different from other children. From as early as I started school I have always experienced periods of the day that I couldn’t remember. At school I was often told off for lying. The fact was I wasn’t lying. I couldn’t remember learning parts of the curriculum and therefore couldn’t complete the work I was asked to do. I use to think people were trying to trick me so I learnt not to be trusting of others. One thing that made it harder to understand was when I asked my parents what was wrong they just said I was a forgetful child and it was nothing to worry about. I just got used to being accused of lying although I would never admit to it. Even when there was proof I had done something I wouldn’t admit to it if I couldn’t remember it. If I had just admitted it then this would have made things a lot easier.
It wasn’t until I was a young adult when the time loss started to become a problem. I started to engage in self-harming behaviour, well that was at least what I was told. I just accepted this was the truth, after all the cuts on my arms and the admissions to hospital were the proof. I didn’t question what I was accused of because there was now physical evidence of what I was being told I had done. At 18 a psychiatrist saw me for the first time because of an overdose I had took. I didn’t remember taking the medication but I was so scared of being accused of lying I admitted I had done it but said I didn’t know why I had done it.
Struggling as an adult
For the next few years it felt like my life was spiralling out of control. I had a lot of problems with adult relationships as it became evident to people that I would say and do things that I couldn’t remember. Even though there was usually proof I refused to admit I had done whatever it was I had suppose to have done. I was accused of being argumentative or not taking responsibility for my actions. This was very unhelpful for me as it meant I feared interaction with people as I feared what felt like constant confrontations. No one seemed to look any further as to why a woman of such a young age had such an appalling memory!
The most helpful thing a person did for me was to take me to the doctors for what she called my forgetfulness. Eventually this meant my behaviour was monitored on an in-patient basis and I was told what the problem was. When the CPN, Psychiatrist and Psychologist told me I had DID I was relieved. I didn’t know at the time what DID was but I was happy to know what was happening to me had a name. My CPN explained to me that it was a mental illness and even this didn’t faze me. At 22 I am unsure now looking back if I understood the full impact of what was being said to me. Although there was a justifiable reason to my forgetting I was quite naïve as to what my disorder meant and how this would affect my life. I thought I would just get better and everything would be OK.
A continuing nightmare
Looking back I was so wrong and it was only the start of a continuing nightmare that has still not ended today. I knew why I had the disorder but had no idea how I was supposed to get well from it. I wanted to get better but at the same time didn’t know what this meant as this was how my life had always been. My close friends told me I didn’t need to change but I didn’t really feel that I fitted into society. It didn’t seem wrong to me but I had learnt from an early age that most people didn’t understand my problems. This has meant that since a child I kind of lived in a secret world that no one else knew existed. This is the one thing that kept me attached to my family. My family understood what was happening to me and for a very long time this was very important to me. As a child they seemed to encourage the time loss by calling me different names. This was always very difficult for me to understand but I now realise my family knew of my disorder and used it to their advantage.
The reason I have my disorder is because I suffered severe abuse at the hands of both my parents, most of my relatives and then friends of the family. I cannot remember how old I was when my abuse started but I always remember it being a part of my life. I just accepted this to be normal. I remember at one point, I am not sure how old I was, I wished I was hiding in the garden or the woods and therefore wasn’t being abused. Although I do remember a lot of my abuse I think I somehow imagined so much that I was hiding that I created my alternative personalities. . The time loss I experienced and still do was when the other personalities took over when things got too much for me. In a way it meant the abuse was happening to them and not me. It meant that during my abuse when things got too much for me another personality would come out and I would sort of take a rest from it all. It meant that the abuse was shared, going to school was shared, but most importantly the pain fear and trauma was shared. We managed to work together to protect ourselves as much as we could and live as normal a life as possible.
Protecting and perpetuating
The truth was though, our life was far from normal. By creating the other personalities it also meant that my abusers could get away with what they were doing. Between us all we managed to put on such a strong front that no one ever noticed we were being abused. We kept it very well hidden. Some people suspected it but between us all we talked our way out of it as we were so scared of what would happen if any one found out what was going on. We lived in our little world that no one knew about.
Up until my diagnosis I felt lost and felt no one understood me. The only people I thought understood me was my parents. I remember being called different names and although I thought this was strange I learnt that I didn’t question my parents. I now realise that the different names I was being called were names of my different personalities. I have thought long and hard over the years as to why they did this and without asking them I can only presume they would call the other personalities out so they could abuse them without me knowing. This meant I could not tell any body. The other personalities were unlikely to tell any body because to the outside world outside the family they weren’t known about or talked about. This was the perfect cover up really.
I guess looking back the personalities protected me. They worked together as a team to protect each other as well. They would comfort each other in an internal world that I was kind of separate from. This meant when I was struggling and not coping they would come out to protect me. I would lose the time and my body would heal while the other personalities were out. We kind of self nurtured each other through a horrific childhood.
The self nurturing can be seen as both a good and a bad thing. Even though I had no family to love care and nurture me we had each other. On the other hand, because we did so well at looking after each other it meant that my abuse was allowed to carry on throughout my teens and adult life.
I wasn’t alone
My disorder has meant that I didn’t have to cope with my abuse alone. Deep down I am saddened by the fact I had to create my other selves. If I had what I should have had, and that was a loving and protective family then I wouldn’t have needed to have created DID as a coping mechanism. I wish that people had looked at my presenting self more closely and asked why I was acting the way I was. If I was a teacher I would like to think I would ask a child where their facial bruises came from, why they never wanted to go home, why their attendance was appalling, why I was never allowed to take part in PE and then when my brother joined my school why was he just as troubled as his siblings. Looking back the evidence of abuse was there. For some reason it wasn’t fully picked up and although I have fond memories of school I won’t forgive them for letting me down.
Throughout my life my other personalities have got me through some very difficult times. Without them I do not feel I would have coped as well as I have. I feel that I would be more traumatised than I already am because there would be more for me to remember. I do not remember what happened to the other personalities so that means our memories are all shared out which I think actually makes it easier to deal with. I feel like I remember far too much abuse, having the other selves’ means they remember what I couldn’t cope with. In a sense it is hard to see myself as disordered because having the other personalities means that between us we actually manage to live quite well. So well that many people I know don’t realise I even have mental health issues.
Although my life can be quite chaotic I am very grateful that I have the other personalities that I now call the Petals. The reason why we chose that name was because a friend wanted a collective name for them to make it easier when writing cards etc. I decided how a flower has the main root (me) that grows and eventually develops lots of petals (the other personalities).
There are so many things that people do and take for granted that proves to be a challenge for me. This is because we are a group of people sharing the same body and life. When I go shopping for food, toiletries, or clothes I am in a sense not just shopping for myself but for all of the other personalities with varying tastes and preferences. We all have different ideas as to what we want to eat, what we want to wear, what type of friends we want, different ways of spending our free time and even different ideas with regards to careers. I have often found food in the house that I don’t really like and yet one of the other personalities must like it. I am often frustrated to find chocolate wrappers in the bin as while I try to lose weight and work out at the gym, the younger personalities get to have the pleasure of eating the chocolate! Because there are so many varying tastes I often find it helpful to go shopping with a support worker and stipulate that they only allow us to purchase what is on the list. Nowadays it seems there is much more cooperation between us all so we have become more independent. Things can however change quite rapidly.
Life with my petals
Over the years living with DID seems to have gone from a coping mechanism to a very different way of life to what others know. I would say that although my life is different to many I wouldn’t really want to live a conventional life as to me it would be alien. To me there isn’t really anything wrong with living the way I do and sharing my mind body and time with the other personalities and in a way I would rather this. Between us we achieve more than what I feel I could achieve on my own. On the down side even though I am no longer being abused I feel I have to worry about keeping safe to a greater extent. We now finally have the freedom to do as we please with our life. It is still a life that is shaped by our abuse and this does shape how we all live our life. Of course to the outside world I am seen as an adult. Every day people do not know there are a host of personalities who are of different ages and therefore see the world from a child like perspective. While many people are careful with how they interact with a child, many are not as considerate when it comes to interacting with what they think is an adult. The body is that of an adult but even as myself I feel quite young for my age. There have been times in my life where either the younger personalities or myself have been re-traumatised because there are times when the younger personalities or I do not feel able to say no to certain activities. Also where we have been abused all our lives some don’t know they have the right to protect themselves etc. It is a case of the older personalities kind of play parent to the younger personalities but also to me as well at times.
Understanding my personalities
One thing that has always been helpful to me is having support workers who understand the DID. A few close friends also know. This means that the younger personalities can participate in age appropriate activities with an adult present so they are safe. Without these understanding people the younger personalities wouldn’t be able to enjoy their life as much and seeing as over the years they have done so much for me I feel it is important they now enjoy life. Because there are so many personalities it is often very difficult to please everyone. There are often disagreements about how we spend our time etc. Again this has improved with time because at one point it seemed like everyone was just going off to please themselves. Now there is more of agreeing going on. There is no denying if I was an adult living without DID I would have a full 24 hours to do what I wanted with. Because I have the petals there are frequent disruptions to my day where I lose time so planning my time is very difficult. It often feels like there is not enough time in the day. This affects the petals less than me because they don’t lose time like I do. They usually always know what each other does and always know what I am doing. They kind of observe life from the inside. When they come out I don’t know what they do so there are times I don’t know what I am doing.
Although I am an adult I have always feel quite young for my age. I have never felt that I have the level of maturity others have who are a similar age. This maybe because as a child and teenager I lost so much time to my other personalities that my emotional development was disrupted. I guess losing so much time meant I didn’t grow up like most people did and in a sense all of my strength was put in to surviving each day and the horrors that came with it. Although I can acknowledge I am an adult I often feel otherwise and do actually feel that some of the other personalities who although are younger than me are more mature than I am. A lot of my life experiences have been quite negative and I feel this has affected how I interact with other people. From a very young age I didn’t want to grow up and although being a child was unsafe I wanted to remain a child. This I think is because I have always longed to be looked after and as an adult I am expected to do that myself. I am fiercely independent and in a way I am happy that way as it keeps me safe. On the other hand I often wish I could be comforted like a child is. I do not feel I have the level of control others have over their life and this is because my life is shared with the petals. I often compare myself to the other personalities like they are separate people. I know they are not but then it’s hard to acknowledge they are part of me when there is a big disconnection between us all. I often feel that the petals are stronger than me and cope better than me. I think they appear to cope better than me because they have each other for support where they can communicate with each other. I am quite separate so don’t have this level of communication with them. I often see them as good and me as bad and blame myself for the abuse they suffered. This is because I was the one that created them.
Safe but fearful
We have all been safe from abuse for nearly 3 years now. This is the longest period of time we have been safe and I am very proud of our achievement. Even though we know we are safe we live with the daily fear of being scared that one day we will be found and took back to our family. This may or may not happen and all we can do is live life hoping we remain safe. Even though we chose to move away from our family I don’t think it was really a choice. Sometimes I want to move again just so this time round it really is a choice and not that we are running away. I have always had to move for safety reasons and this means we now have to live life not having a family. Although I don’t really miss my own family I miss not having a caring family that most people have. I have had to make personal sacrifices to keep myself safe and this has meant I have had to walk away from people that I love because people they are associated with were not safe. This in a way took huge strength and determination but also caused a huge sense of longing for people that I still miss today.
It is a sad fact that a big part of society does not understand DID. This means that life has often seemed very unfair. I once applied for voluntary work where I would be working with deaf and blind adults. I was required to undertake a CRB check because of working with vulnerable adults. The police disclosed my DID and this was extremely upsetting to me because having a mental illness is not a crime. What was more upsetting was that they hadn’t actually checked if there was any child protection risks and I felt they was saying my DID was worth a disclosure but checking whether I had been investigated etc for abusing children was not. I felt like I was deemed a criminal until I proved otherwise and I didn’t feel able to take on the voluntary position because I choose not to disclose my DID. I did however gain great pleasure in receiving an apology from a chief inspector as I took my complaint to the independent police commission. I was given an apology and a promise that no future CRB checks would disclose my DID.
For many years the NHS turned me down for Psychotherapy. A Psychotherapist once said how I wouldn’t cope with outpatient therapy and gave me the choice of admitting myself to a therapeutic community or nothing. Because I know I would hate living in an impatient setting I turned her offer down and decided I would have nothing. This meant I got no support. I feel that if I was given adequate support both as a child and adult I may have got away from my abusers sooner. I feel like I slipped through the net when at the end of the day the opposite should have happened. My abuse was so severe I created the DID to cope because no one was helping me. I feel very let down by most services that are set up to help protect children from abuse. With no support I was socially isolated and therefore felt contact with my abusers was better than no contact with anyone.
I think many mental health professionals do not understand DID. Some may not have come across it before and therefore do not know how to work with it. Some are fearful of the disorder and some are just so ignorant they refuse to believe that it exists. This causes a lot of frustration for myself as I do not feel it is fair that mental health professions get training on more common health issues but not DID. This in a way means the most hurt and vulnerable members of our society are not offered help and support and this, without looking at their daily struggles is sobering. Sometimes when mental health professions do know about DID they refuse to talk to the petals and this again hurts me. I feel they have already led an invisible life keeping me safe, that they to was abused and yet they are turned away by the people who are willing to help me. What these professionals don’t understand is they could actually learn so much about me if they was just willing to listen to the petals. I often really struggle to ask for help when I am struggling. The other personalities will give an honest account on how things are. They will tell people when I am feeling low etc and most of the time have a better understanding on what is going on than I do. I feel that some people get so wrapped up in what my disorder is suppose to mean that they miss what is most important and that is the hurt person behind the label. Instead of treating the disorder they need to treat the person who is distressed. This has often meant that a small problem can escalate in to a huge problem just because someone has failed to listen. There have been numerous times we have called the crisis team for out of hours support. In practice this should mean when people in my care have gone home I have the back up of the crisis team. In reality what it meant was I could call the crisis team but the petals couldn’t and it’s the petals that are able to explain what I need because I cant. It has meant that the petals have called and said I am suicidal etc and they have been told I must call myself. 9 times out of 10 I wont call myself but if they were to listen to the petals it would enable them to support me better. The petals have done the hard part and told them how I am feeling and this then in the long run makes it easier for me to talk. I don’t actually have to say how bad I am feeling but will talk though my distress.
Living with DID can be difficult and I realise working with it can also be difficult. My diagnosis is a valid illness however and should be treated as such. I didn’t diagnose myself and if people are able to diagnose me then they should be equipped to treat me. . When it really comes down to it I am no different to anyone else who has any kind of illness. My diagnoses may be rare but I am first and foremost a human being and should be treated as such. I am more than the labels people give to me. All I really need is the patience you would give to any other person who was trying to come to terms with an abusive past. The understanding and support you would offer any other person who is suffering from depression and intrusive thoughts. The compassion you would offer anyone else who has experienced personal loses and hasn’t come to terms with them and a listening ear to understand the complexities and difficulties of every day life.
Before doubting my disorder or presenting symptoms people need to acknowledge that their actions towards me have consequences and those consequences have reactions that will shape my life and perceptions of it. I may have the other personalities but the most helpful thing anyone can do is acknowledge them and treat them age appropriately. They are simply different aspects of me at different ages and stages of my life. If they are ignored than so am I and its ignorance that allowed my abuse to go on for so long. It was the fear of not understanding my disorder that left me without support for so long. It was the not knowing what to do that left me at the mercy of my parents and it was the not accepting that meant none of us spoke up. To listen to all of us is to accept all of us and to accept all of us allows us to move on knowing that we are not some unusual condition but a person who just has many aspects to them. My disorder is only what a person makes it and if someone chooses to make it a condition they cant understand then that is what it will be. If they choose to be accepting and open with no preconceptions then they will realise that I am no different to support than any one else with a trauma related past. All we want is practical and emotional support to rebuild our lives after a history of severe abuse. I do not want to live my life struggling to get people to understand me. I simple want people to accept me for who I am and realise that this is fluid and can change. Everyone has different aspects to their personality, mine are just more separate.