Hi all,
My partner and I have been together for almost 20 years. She’s always had challenges with her mental health and had the unfortunately familiar story of teenage crisis intervention for eating disorder, then yo-yo with anti-depressants etc and finally ASD about 5 years ago. Covid was the catalyst for a huge meltdown, and she lost her job (fair enough and no issue with that decision). She’s also since developed significant joint problems which impact her ability to exercise (her major way of keeping mentally well) and her catatonic episodes (which we manage using lorazepam) are becoming more frequent. It’s a minefield of trying to get the treatments right so she can exercise but one we’ve not been winning. The last 3 months things have worsened so after some googling (GP hasn’t been overly helpful sadly) we think perimenopause could be at play here. Another can of worms to deal with as very little research at the best of times but add in ASD and that’s a whole other level!
My day-to-day has been harder and harder. She’s low in mood but doesn’t believe in medication for that (respect that) and whilst she can make her own breakfast and coffee it can take several hours. I once tried to help but that resulted in a huge meltdown at me for taking away her one thing (lesson understood!)
I’m juggling a job 4 days a week, studying for a post-grad, keeping a house clean and tidy, all of the life admin (currently trying to organise a boiler service but she gets stressed with people coming into the house so can’t be a wet day!), her medical appointments, all domestic tasks (she can’t manage to make evening meals reliably so I do meal prep and then cook once I’m home after 12 hours out) etc.
Somehow I need to fit in exercising as well amongst this.
I feel very alone in this situation. My partner is super intelligent and used to have a good job at a university, albeit part time and with flexible hours. She’s incredibly adept at masking so none of her friends or most of her family have any clue about all this, which is how she wants it to remain. We have a lot of shared friends so it is very difficult for me to keep the pretence without lying. The back problem has been a bit of a lifeline in that regard.
I have tried local carers networks but it seems mostly parents with kids that have complex needs, or adults caring for elderly parents (again, understandably) Perhaps the taboo around ASD and “high functioning” means that there are many folks like me sitting silently in our homes, coping with the stress of keeping your mouth shut because the time to say the thought you have isn’t right (no decisions or ideas after 8pm unless I have time for a 3 hours deep dive or it triggers something), or their loved one is private and does not want anyone knowing the pain they go through to “fit in”.
If I told my friends all that went on at home they would have the social services and medical team here in a flash because out of context it would be seen as controlling, modern day slavery, all sorts! They wouldn’t understand that the shouting, the swearing, the throwing objects, all because I did something in a way that is different to the way she would do it (and have been told before!), is part of her ASD and not some manipulation of me.
So that’s why I have ended up here. Seeking out those people like me or seeing if there is some virtual and anonymous world we can connect in. To share the frustration and the guilt. To learn. To celebrate the joy and the good stuff. Like when you get a compliment you know it is not lip service. That when you have a problem there will be a fair and objective analysis to help you. And the detailed knowledge and understanding of any given topic of interest is a beautiful and mesmerising experience to see and be part of that discussion/monologue!
If you’ve managed to stay with me, any advice or direction greatly appreciated!
