(18+ only) What's going on for me at the moment.

marmitelover2000

Please don't read if you are under 18 as this has things inappropriate for young people

I have autism and some complex health issues. (me and another think is a mitochondrial disease due to some test results)

I have gastroparesis, I'm tube fed, I have trouble swallowing, hearing loss, eye muscle weakness, fevers upon exertion and trouble with mobility. (all proven with tests by professionals[except fever which just happens and mobility] )

here is what happened last year:

I went to a psychologist so that she can confirm my health problems "aren't in my head " so I could get a referral to a specialist. For reasons which I later discovered that was a question. Which looking back is unbelievable.

The psychologist said it certainly was not in my head. I have symptoms of PTSD from traumatic hospital stays. But this likely has little effect on my health problems.

My parents got wind of this and spoke to a different psychiatrist behind my back. They told him that they suspect I have factitious disorder. They also got in contact with "the expert in America" who can't see me because I'm from the UK.

The psychiatrist above called a meeting with my whole care team and told them of the suspicions. This was before he met me or the psychiatrists and psychologists who assessed me (because I asked them to for transparency)

Needless to say this had a huge impact on my care, I was already afraid to receive care (when I was younger this prevented me telling anyone anything was wrong) and now if I tried to receive care my parents would tell the care team and I would be treated like dirt. They would withhold pain medications etc.

This made my health a lot worse but I was too afraid to seek care and instead spent all of my energy on trying to fix everything myself. This was used as proof of factitious disorder but still not a diagnosis.

I was isolated to my room and ant contact with the outside world was seen as attention seeking. My gait has slowly gotten worse along with my mobility. This has lead to constant scrutiny and my mum makes fun of it a lot saying I'm doing it for attention.

I've lost everything I love due to illness and now they're saying I'm doing it to myself. Even going so far as to say I'm ruining my siblings life. This lead to me being further isolated from them. We are in separate houses (separated parents) and I'm like the hot potato, once the parent gets tired of me, they send me to the other one.

My mum was saying that the reason why my teenage sister is struggling at school is because of me. Even though I rarely spoke to her. I started staying in my room to avoid any interaction whatsoever. I wanted to limit the harm I do to other people by being present.

I only really ever went downstairs to cook for my dad or to get a snack. ( I still eat, I probably shouldn't but its the most interesting thing in my life)

My mum said I need to go, she wants me out the house( she say's she is my carer) . She wanted to stick me in a caravan at the side of the house. The counsel said no and this made her frustrated and angry.

This lead her to get even worse shouting at me saying what I'm a terrible person I am. She wanted me gone. In the end she made everyone swap rooms so that I'm at the other end of the house. The idea is out of sight out of mind. They would brick up the corridor that attaches it to the main house so I'm in a self contained unit.

She had this habit of coming into my room, usually in the morning when I'm confused and stuck in my bed. She would stand infront of the door blocking it to shout at me. This was the only interaction of the day I would have with her because I try and avoid conflict)

I started wedging the door and it mad me feel safe.

The day after she told me about this move, she said she wanted me out now. She said that If I didn't she would evict me. She would call the police and social services which would give me all the attention I crave. I didn't budge. She suddenly changed, she was nice and wanted a hug. I'm now in the self contained part of the house. She still comes in (despite saying she wouldn't)

I take codeine and sleeping tablets to deal with it. I don't know if I'm addicted, I just want to escape everything. And if I die, that's a bonus- no more of this. It's the only time I feel safe and warm and happy. I used to feel happy, now I can't imagine it.

durhamjaide2001

You can't stop young people from reading it

Albus_Scope

I think they mean it contains content that younger people may find upsetting @durhamjaide2001 they're just looking out for peoples mental health.

I'm so so sorry to hear how things are for you at home @marmitelover2000 have you spoken to anyone about how you're feeling? I think speaking to your GP regarding your mental health may be a good idea if you haven't already. Please be careful with the codeine.

How do you feel about possibly moving out? Have you spoken to anyone about the possibility of moving into supported living perhaps?

One of the team will drop you an email tomorrow, so please be on the look out for it.

durhamjaide2001

thank you for clarifying