What it means for me, in real life? I think the hardest thing for me is the lack of acknowledgment of my condition. You might be surprised to know that I can't access mental health services on the NHS. You see, n this country its not seen as a serious condition, merely a psychological condition. Which in plain terms means it cant be treated with drugs, and can only be treated with long term intensive psychotherapy, which of course is expensive. Not only that, if i have a mental health breakdown, or crisis as it is known, I can't simply go to a hospital and be admitted. They wont take me, i dont fit the treatment criteria. When your feeling low anyway to be told you don't somehow fit just makes it worse.
The lack of acceptance of my condition reflects on me and how I see myself. If everyone and everything is saying you don't fit and your not worthy of treating because your too expensive then that is going to make me feel pretty bad about myself. On top of already feeling bad about myself because I can't function normally and have a tendency to start acting like a kid or collapsing if i cant cope with a situation.
Yes, effectively there are more than one of me. The me I am at the moment and the me that I have been for some months now is not the me on my birth certificate. They are in hiding because life is too hard. So effectively without my main person around I am trying to survive the best I can with limited support. It is like and will be for my main when she wakes up like they have been in a coma for the last few months. I don't know what will be remembered, and at the moment I am worried whether i will see my main again.
So, here I am, shunned and ignored by the NHS, not able to access treatment, no recognition etc etc. Even my gp says im not properly disabled. I spend most days in my house where I feel safe, as I have been attacked on the bus for sitting on the disabled seats when of course I'm not. In fact I need to sit on the single seats because I have a great fear of being touched. no one sees that though. I try to cook when I can, and I have a dishwasher that helps. Without the dishwasher I would use paper plates. I have recently put a shower cubicle in because a bath was too difficult for me to cope with. Even with my new shower I haven't had one for months because I can't face it.
the ME i am at the moment is a teenager, trying to cope with adult life. I am lucky that all my bills are paid with direct debit because I cant deal with money.
The food I eat comes in a box to my house. Thats either online shopping or takeaway. Takeaway is a treat and its nice to feel that I deserve it. I can order if over the internet because i cant use the phone. Sometimes i can't remember what day it is, or if i have eaten that day but at least I can get food and I eat when i feel hungry.
This story does have a happy ending, of sorts. My DLA. It is some recognition from someone that I struggle with life. Its not just abot the money, its someone saying, your disabled enough and you need help and care. Not that i listen sometimes. I get higher rate care and lower mobilty. This means I can afford the private treatment not available on the NHS. It means that I was able to save up to get that new shower cubicle, and the dishwasher. It pays for my food in whatever form it comes in. It means I dont have to worry about the bills and money in general. If i feel like treating myself I can. I would love to have a carer of sorts to help me keep my house tidy and helping with letters and stuff, but because my house is my safe place no one else is allowed in here. so I try my best, and my DLA helps with that.
I live a secret life, and I dont tell anyone what really happens at all. this is the first time I have told anyone and its all anonymous. The only other time I have been honest is my DLA forms. I couldnt tell a stranger about my secret. I will probably lose my DLA when it comes to swapping it over. I cant be honest about my life to anyone.