This article is to try and inform therapists about
Dissociative Identity Disorder (DID) by sharing somebody's lived experience. Her
words have something for us all to learn from.
The lady who has contributed her story is called
Michaela and I have come to know her through her Twitter
presence. I was alerted to the fact that she was about to start counselling
at a local agency but shortly after her initial appointment she found out that
the agency had been struck off by the BACP for serious misconduct. This brave lady has gone onto
petition our local MP to push for the statutory regulation of counselling and
psychotherapy. Her online petition can be found here.
I have also asked for some input from Carolyn
Spring, she has kindly given
me permission to use the extracts from one of her articles aimed at therapists
which I have included at the bottom of this piece along with details of their
wonderful training courses which are held all over the country.
My Story*, by Michaela
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.
Struggling as an
adult
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 behavior, 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.
Out of control
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.
My personalities
are created
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 yet
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.
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.
I wasn’t alone
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.
My Petals
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).
Life with my Petals
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
Petals
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.
Safe but fearful
We
have all been safe from abuse for 7 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.
Professionals’ misunderstanding
of DID
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 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 too were abused and yet they are
turned away by the people who are willing to help me. What these professionals don’t understand is that 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.
When it comes
down to it I am a human being
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.
Acceptance
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 it is 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 realize 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.
For therapists…
Carolyn Spring of PODS has given her very
kind permission to include an
excerpt from her piece “Ten Steps to becoming a Dissociation Friendly Therapist"
YOU DON’T NEED TO BE AN ‘EXPERT’ by Carolyn Spring
I’m
wary of the ‘expert’ label, because it evokes power and authority, and for
those of us who have suffered abuse at the hands of people with ‘power and
authority,’ it’s a shaky way to start. I prefer the label ‘human being.’ I
value the fact that people are trained and knowledgeable, that therapy is a ‘profession’
for ‘professionals’ and that the training is designed to safeguard the
vulnerable. But treating dissociative
identity disorder is not like chasing bacteria out of the
bloodstream. It’s about a human being coming alongside another human being and
giving them the courage to face the trauma and the abuse that has threatened to
overwhelm them. In that setting, I don’t want some bespectacled expert who can
quote chapter and verse. I want someone who at core is a thoroughly decent
human being, who is willing to let me be the expert on me, who
is willing to learn about me with me, and not assume that I am like every
other dissociative
identity disorder client he or she has ever previously known.
It is a
way of coping with trauma by avoiding it. What that trauma is, what it
has meant for me, how I have avoided it, what I need now, the sense I have made
of myself and the world – all of that is unique to me and my history. Perhaps
some therapists feel a little scared when faced with the prospect of working
with people with dissociative
identity disorder, as if the label is all there is to me and others
like me. But I find that they are scared much less by the prospect of working
with me as just a traumatised human being. It’s incredible how
intimidating and off-putting a label can be. And having it is no big deal. Of
course it’s difficult, of course it’s this overspill of trauma that affects
every aspect of our life, of course it’s this roller-coaster ride of disowned
and then overwhelming emotions, but it’s just dissociative
identity disorder. The therapists who aren’t impressed by my
diagnosis, and aren’t scared by it either, but see me as a human being who has
experienced suffering and who needs to heal that suffering, seem to be the ones
I am most likely to trust and be able to work with.
I highly recommend the training that Carolyn Spring runs which I feel is fair to say is amongst the highest quality CPD available for therapists.
*Special thanks to Michaela for generously sharing her story and for all the hard work she does to raise awareness of abuse. A link to Michaela's full and unedited version of this can be found here.
