In recent days I have begun planning for my CPA early next week and I started to think about the things I need to cover in the meeting. After all this meeting will involve my new care coordinator from the new team my care is transferring to, I haven’t met them yet. It will also involve my existing social worker and my psychologist as well as my daughter, who goes to represent the family and support me.
I know that in the past my interactions with health care professionals haven’t always set off on the right footing, I usually find it hard to trust new people. I certainly have difficulty when professionals treat me like some second class citizen and not the equal that I am. My last experience of the new team dates back some 8years; it wasn’t so great and so I do have some reservations.
I so want to explain to these people that I am not like many of the people they will have worked with, I have a condition they may never have heard of for starters. I am at times able and capable to do most things and then there are times when I things are too overwhelming and hard, times when I need support and help and times when I need them to step back and let me get on with it. Of course those times fluctuate from one day to another, in fact from one hour to another, depending upon which part of me is up front and driving this body we share.
I want them to know how I find each day, what its really like to be me and yet I’m not sure how I tell them that. The fact is I’m not sure my current team get how complicated and complex life can be for me. I’m certain they don’t understand the juggling I have to go through each day just to stay on an even keel, so how can I really expect my new team too. Yet I’m desperate that they do get me and they get the real me, why, well if they misconstrue me then they will judge me wrongly. They will like many before label me, stigmatise me and make assumptions about me which aren’t true and yes that does bothers me.
I know I need to say things at the meeting about how I’m doing, what’s going on in my life right now and yes I can tell them about therapy and what’s happening. Yet I feel drawn to tell them about the things I’m really struggling with, because I need them to know. Yes I have made huge progress in the past 18 months and I’m really glad that I have, but there is still so much I need to do. For starters I want to be able to understand why I’m crying when I cry and yet there are many times I don’t. I want to be able to stop worrying about being judged but it feels like a mission impossible currently for me.
I want so much to be able to sleep in Bertie bedroom, that’s the name I’ve given the room in order to make it feel less scary, yet right now I’m able to just manage sitting in there for short bursts of time and then I need to leave. I visit the room a couple of times a day to get dressed and undressed but that’s all really, I can’t face sleeping in there and I can’t say when I will. It is as I’m often reminded a work in progress and it’s been months of hard work and effort just to get this far, that’s the joy of fearing a room because of linked memories. My bedroom of course is safe; I know that, but bedrooms and beds weren’t always so safe and that’s the issue. I have to overcome a fear that is ingrained in me from when I was young and sadly it still affects my life.
I want to be able to sleep in a real bed and not face struggles doing that, and yet currently I can’t. In fact I’ve slept on a sofa for 9 months now and that’s not so easy to admit to a random stranger; who I want so desperate to see me as an equal. In fact admitting or discussing most of this to someone who can impact my life in either a positive or negative way isn’t easy at all. So my dilemma is do I tell them at the CPA what’s concerning me or do I sit and pretend everything is perfect just because I have a new team.
How do I really trust these professionals who have the power after all to detain me against my will, give me treatment I don’t want and who can forcible medicate me or lock me in institutions all under the guise of healthcare. The power imbalance that exists between me and the professionals is a bit like having a pink elephant in a room, we all know it’s there but no one talks about it.
That power imbalance though is concerning to me, I don’t like feeling out of control and the fact the new care coordinator and her team can take control away from me is frightening. So as I plan ahead for the meeting that in truth can go one way or another, that could be either a huge success or a terrible failure I need to find ways to stay focused. I need to remember these people are not the enemy, they are professionals whose task is to help me recover and deal with my mental health. In truth they are as at much risk of being sectioned as I am, that power hangs over everyone of us no matter who we are, Doctors, nurses, service users we are all able to be sectioned if we are deemed unwell enough.
This meeting maybe a scary prospect but I realise it also allows me a chance to educate people about Dissociative Identity Disorder and about me. It offers a chance to show them that actually I am working hard, it offers a chance to demonstrate my desire to recover and live an effective life with DID. I know parts of me are frightened by the upcoming meeting, trust is a big issue for us and so getting to know new people is hard. But my job now is to stay calm, reassure my alters and focus on showing these people who I really am and how I expect to be treated as an equal partner in my care.
Copyright DID Dispatches 2015