Hi. Before I start my post, I’d just like to say that I’m not a carer, but I’d like to discuss someone else’s carer.
So I am a 22 year old male and I’m in a relationship with another 22 year old.
Before I go on, I would like to tell you a little bit about our backgrounds. We both have special needs and disabilities, including autism, learning difficulties and various medical problems. I have irritable Bowel Syndrome (IBS) and Chronic Fatigue Syndrome (CFS) and she has
bladder/kidney problems (has a bag attached to her wee hole) and a few other problems. She can’t go out on her own in case she has a fit so has to be under near constant supervision.
Whereas I was able to go out on my own from age 19 and able to stay at home on my own from around age 14.
However, that’s where the similarities end. Our personalities are completely different. Other people have even said so. She is usually quite loud, boistorus, energetic, assertive and a bit rude sometimes (though she has calmed down a bit compared to how she used to be),
whereas I am quiet, shy, polite, docile, easygoing and also lacklustre most of the time due to my chronic tiredness, which I’ve had since 2017. However, despite our differences, we get along pretty well, we have a laugh with each other and of course, opposites attract, as the saying goes.
We’ve been going out together since Summer 2016, and there’s been a few hiccups along the way. A few times she has gone out with someone else for a few days, which I got angry and upset about, and I’ve had to fight to get her back, either through persuation, arguing with
her or telling her she’s wrong.
There was one time for some strange reason she decided to go out with a 50 year old woman with special needs, why she did it I have no idea as she’s not a lesbain and likes boys. So that night we were at a community centre (where we meet up once a fortnight) and so I tried to pursuade her to go out with me again but she was having none of it, so I grabbed her phone off her, ran into the boys toilets (where she couldn’t get me) and text her mum that she was going out with another girl and had dumped me (which I knew would anger her) and so I got her done for it and she went back out with me again.
Anyway, we have been together for a few years now, I have forgiven her and we both love each other very much.
I now come to the main point of my post. Her parents, grandma and carers are very strict (at least for her age anyway) and pretty much treat her like a child - they make her come off her phone/ipad by 10 pm (sometimes even earlier than that), tell her what time she has to
go to bed and her mum still sometimes takes her phone off her when she is naughty or does something that she doesn’t like - for example, just recently she was getting upset because another girl who she used to go to school with wanted to go out with me and got jealous so tried to force her to split up with me. I kept telling her she needs to block her but she still kept talking to her and eventually her mum stepped in and blocked her. However, she later unblocked her so got her phone took off her for a few days. Which at her age I think is a bit unfair really.
My girlfriend also tells me that her mum is very strict in general - she makes her come for her meals when she tells her (and gets very cross if she doesn’t), forces her to go out when she doesn’t want to and just doesn’t give her much freedom at all. In fact a few days ago I asked her to take a few photos of me on facetime and she begged me not to tell her mum becuase she would go mental if she found out. I was completely baffled about why she would get angry other such a small and harmless thing.
My parents and carers on the other hand are much more relaxed. They let me go out when I want (which other than college, isn’t often due to IBS and tiredness), let me go to bed when I want (though if I’m up really late they do give me reminders and ask if I’m okay), let me buy my own clothes and snacks etc, don’t force me to do activities I don’t want to
(for example if they are going on a day out or to the theatre they don’t make me go out with them). I also haven’t had an official bedtime for quite a few years now. My parents also haven’t limited my screen time for quite a few years. My mum doesn’t even prompt me to have showers anymore - if I choose to go two weeks without a shower then that’s my decision - she would only intervene if I started to smell or I got health problems as a result of not showering. I also make my own breakfast/lunch and my parents always ask me if I’m ready for my tea - if I am then I say so but if I’m not then they’re fine with it and just leave it in the microwave for me to get when I want it.
Whenever my carers come round they are also very nice and never force me to do anything I don’t want to - they give me options or pursuade me but they never force.
But sadly my girlfriend doesn’t enjoy the same privilages and freedom that I do. Just a couple of nights ago I was talking to her on facetime and it got to 10 pm and her carer walked in and demanded she come off. She started stressing at her and then I asked if I could have five more minutes so my girlfriend asked her carer but she still insisted she came off, she then argued for a few seconds before she took the iPad off her, put it on the table before saying “now you don’t get to say bye to him”. I was furious, so I shouted
“SHUT UP YOU HORRIBLE WOMAN!” and then ended the call.
A few minutes later she sent me a text saying “Goodnight babe I will talk to you tommorow. I had to go cause my carer said, she weren’t happy cause I didn’t listen to her love you (kissing face) babe xxxxxxxxxx”.
I then sent a reply saying “That was very mean of her to do that, forcing you to come off like that, I thought carers were supposed to be nice. You’re an adult for gods sake, not a 7 year old, at your age you should be allowed to stay on for as long as you like. My parents don’t force me to come off, I can stay up till whatever time I want. My carers also never force me to do something I don’t want to, they pursuade me but they never force. Sorry for my angry outburst but I’m getting really pissed off about this.” (angry face with steam coming out of nose, red angry mad face).
What makes it worse is that this carer is pretty young and is probably only in her 20’s herself!
Since then we haven’t talked since and I haven’t received any texts off her. I’m worried
that she’s had her phone/iPad taken off her again becuase of this.
Im just really upset and angry about this. The more I think about it, the more I think how ridiculous this is. Taking someone’s electonics off someone and forcing them to go to bed at a certain time is something you do to a 13 year old, not a 23 year old. It just seems really wrong and mean to me. I mean, most 23 years olds are going on nights out, socialising with lots of different people, drinking, having sex etc, whereas my girlfriend is stuck indoors all day under the full control of her mum, her grandma or one of her carers depending on whose house she’s at that day. I just feel really sorry for her.
It was fine when she was 19 and still a teenager but it’s not fine now.
Yes, I know she has medical problems and yes, she can be difficult or a pain sometimes. But
I think at her age she should be given more freedom. I mean her parents aren’t going to be around forever and she has to grow up sometime. I bet everyone still sees her as a child and doesn’t realize how old she is.
It worries me because she is nearly 23 years old but is still being treated like someone much younger, and I also worry what about when she gets to 25, 30, 35??? Will they still be treating her like a child then? It just seems completely wrong!
This definetely doesn’t feel right to me but I’m wondering what you guys think.
Any advice please?