The service where I am in therapy at the moment has suddenly (from our point of view as patients at least) changed our care coordination appointments from monthly to quarterly. Less than quarterly, in practice. I was supposed to see my care coordinator today. The appointment has been moved to the end of September. This will be 4 months since my last appointment at the start of June. This comes at a time that I desperately needed care coordination and when everything feels on the edge of fragmenting.
I am furious at how this change has been made, for myself and for other people in my therapy group. I’ll post about that next.
I spoke to my care coordinator about it on the phone and one of the most hurtful things that he said was that this has been an “ongoing clinical decision over several months” and they think this is the best way to challenge us to have more independence because instead of having a care coordinator we’ll have to take the initiative to sort out our problems. I’ll set to one side for the time being the hurt caused by having been kept in the dark, not warned, let alone involved, in the “ongoing decision”; the apparent total lack of awareness of why care coordination is needed; the assumptions about knowing what is best for us….
One thing that really really hurt and I wanted to scream and felt utterly betrayed again by the people supposed to help me and understand me was – we do not need a test, or a challenge, or to be forced to be “more independent”. We desperately need to be heard and to get help. I have been in this service since November 2014 and I am still screaming inside and falling to pieces and trying to be heard over the same issues as when I first came to the service. We have always been on our own. We have had to do everything with no help and knowing everyone will leave us. We just start to trust this service and dare to think perhaps they’ve understood a tiny bit of what it’s like, and then we get proof it was all an illusion. Never in my whole time with the service have I felt safe, been kept safe.
And here comes the thing it’s so very shameful and not allowed to admit. Sometimes – even a lot of the time – I don’t want to be independent. I want to be heard and I want to be cared for. The abused and terrified and frightened child inside me has never ever been heard or believed and has never been cared for. I have fought and fought on my own and I cannot do it anymore. I need help. I can shut up the child for so long by cutting and starving and drinking and overdosing. But there is a point of breaking. And I’ve passed it. I’ve never been safe. Never been safe from my abuser. Never been safe from what goes on in my mind, the pain, the hallucinations and flashbacks.
I know these feelings aren’t allowed. We have to take responsibility. We have to be independent. We have to be adults. We have to function.
Is it so very wrong to want to be kept safe? To want someone to hear and know how utterly painful it is? To want someone to care for us? To want someone to stick to what they agree to and not trick us, not tell us they understand but then leave us alone when we most need help? If I am not independent is that really the most important awful thing? Why should I not be allowed the help I need because it’s so desperately important I be independent? Nobody kept me safe as a child. Nobody cared for me. Over and over again my abuser tricked me and left me powerless. The service I should be able to rely on now in my treatment, to understand and help me, makes me feel the same. In no way is it an empowering kind of being made independent. It’s being pushed away and tricked and all the cuts made deeper still.
I’m ashamed to admit it but I want someone to care for me. Before I can start to get any more ability to cope on my own I desperately need someone to understand how loud I’m screaming and how much it hurts and not to leave me, hold me and stop me from falling to pieces, stop me from losing all grip on reality because the pain and terror is so utterly consuming, hold me and allow me not to be okay. Then maybe I might be able to take very gradual steps to take back responsibility for one thing at a time. I don’t need to be tested, tricked, pushed away, not believed, not heard, used over and over again and taken to the most vulnerable desperate point then what tiny little things we hoped in taken.
I am full of anger and pain and rage at being tricked and used all over again.