Facing a period of change & uncertainty – I am slowly realising why I find change so hard
This week I have faced some changes in my daily life, for the past 21months I have had a regular Personal Assistant one who all parts of me had become used to. This was a person who we felt comfortable being ourselves with, a person who wasn’t going to run a mile if we suddenly switched alters, and who seemed to understand D.I.D. This week that person has moved on to pastures new and thus the search now begins for a new person to help support me.
This of course is not so straight forward, finding people who want to support someone like me is never easy and I need someone who is doing this as a vocation and not just for a wage. I have had my fair share of support staff since I left hospital and we have had seen both good and bad examples of support staff.
Given I am trying to lead as normal a life as is possible with Dissociative Identity Disorder I don’t need people to treat me as if I’m incapable or some sort of invalid, I need people who empower, encourage and support me. I guess I need them to help me redevelop skills that I lost during my lengthy stays in hospital when I did become institutionalised and to learn skills which because of my past have never really fully developed yet.
My PA’s are the lifeline that helps particularly when I switch alters to ensure we keep safe, that help us when we struggle and find ourselves ruminating or with thoughts of desperation and self harm. They are if I’m honest a crucial element of my being able to stay out of hospital, I don’t think that I could have stopped that revolving door of admissions without them.
When I first came out of hospital I hadn’t made a meal or a drink in more than 2 years, I had literally done no activities of daily living unsupervised for over 30 months it was so deskilling. I remember at the start asking for permission to make a simple cup of tea, I felt intimidated by the kettle, I hadn’t used one in what felt like forever and I certainly hadn’t been allowed to just get a drink at anytime of the day or night.
Hospitalisation was dehumanising in so many ways, imagine having to ask for every single drink being forced to drink from a plastic beaker and knowing the staff control everything and could and did quite often say No to a drink. Well that was what life was like for me in the secure units, it was simply controlling, demeaning and soul destroying. Acute wards were slightly better there was a drinks machine that operated set hours and as long as it worked offered some choice, but still the staff or the hospital managers dictated the times we could drink, often 8am till 11pm. One ward I was on allowed 6 drinks per patient per day which worked as long as no one used your allowance as well as their own, thus robbing you of a drink. The staff seemed unable to see the injustice if a patient managed to use all their allowance and other patients too. It was just simply impossible for extra drinks to be provided it felt like a form of control and one I never quite settled with.
So when I came home it did take a while to get use to the fact I didn’t need to seek permission anymore, that I had freedom and choice. It was the same with food, I’d lived in a regime of set meal times, set food and often not that tasty either. If I’m honest the control I endured was similar to that I faced as a child, my main abuser was a primary care giver and she controlled most of what went into my mouth. Food wasn’t fun very often in fact it was a form control and punishment, thus to this day I have a problem with eating. Being in a controlling hospital environment didn’t help me deal with my eating issues it just exacerbated them and recreated traumatic situations and triggered past memories.
Because of the control in hospital and the deskilling it caused my support staff are important and they help me in so many ways, I am certain that currently they are a necessary part of my life and so finding a new one is a challenge. I need to replace my PA as quickly as possible in order to maintain progress, this is an important issue I am so determined to maintain the progress I have made thus far. The departure of a PA is always going to result in a period of change and uncertainty, it’s simply impossible for such events to not cause change and uncertainty, but this is something we have to deal with.
So now as one chapter ends my family and I face a bit of a challenge as we search for a new PA, and belief me that isn’t easy especially for someone with Dissociative Identity Disorder. As one of the difficulties that I have is that I find trusting people really tough and of course it’s not only me who has to trust but all the alters too. Now yes I understand my alters are parts of me but all those parts need to learn to trust individuals and because of the past we all have issues with uncertainty, new relationships and having to basically learn to trust a stranger.
Then of course there is the issue of change, having a new PA is a change which won’t be straight forward or easy. I find change really tough to cope with be that a new person, new place or new situation change is fraught with anxiety and leads me to feel really unsettled and destabilised. I’m already having to do work internally about the changes we face in preparation of a us finding a new PA. I have spent the past couple of weeks preparing myself and my alters; the other parts of me, for the departure of the PA who had become part of our regular routine.
Change is tough for many reasons, but I guess I lived in chaos for years, my childhood was filled with change, be that different homes, schools or abusers. Change usually meant something bad in those days and I believe it has shaped how I view change to this day.
In the past year I have faced many changes, I have lost one therapist and gained my psychologist, a significant friendship has ended, a relative has died, my care plan has changed and now this current change. Yet if I’m realistic we have coped with all the other changes this past year we have dealt with them and survived so there is a chance, a good chance that we will deal this latest change.
I am aware of the issues, aware of my difficulties with change and trust and I have the support of my family who want so much to ensure we employ the right person to help me keep moving forwards. Perhaps we are slowly over time getting better at dealing with change, it’s just a challenge after all that we have to face and deal with.
Hopefully in a few weeks I’ll be able to write about how I’ve coped with this change to my daily life, hopefully it will be a positive update. I guess I can hope that this change is going to be ok of course I don’t know and that’s what’s scary, but then in all truth nothing in anyone’s life is ever certain. My main task right now is to try and keep all of me settled so that we can deal with this change, so that we can overcome this legacy from my past of fearing change and learn to deal with the issues of trust and change. Wish me luck!
Copyright DID Dispatches 2014