Published on 12, July, 2020
I wanted to join a discussion for women married to men with Aspergers but I must be a bit thick as I can't see how to join in the threads I have read so far. I have been married for 45 years and for 34 of those years I have been chronically sick and disabled. Although I always knew my husband was 'a bit strange' I thought it was mostly his upbringing and then this year discovered it was Aspergers. Reading about it and seeing a counseller has helped but I am overwhelmed by the sadness I feel that I have in some ways 'wasted' 45 years of my life expecting something different and always trying to work things out and hope for change. Now I know that I can stop banging my head against a brick wall but I also know that if I could turn the clock back I would not have married this man. I can't leave him now. It's too difficult because of my condition. I have often said that if my husband had taken up medicine he would have been a brilliant surgeon who would save your life but have no bedside manner! It's the emotional support which is lacking. He can build a ramp and adapt a bathroom but when another long term medical condition hit me 3 years ago and I thought I was going to lose my sight he said NOTHING! It's words that fail him. Anyway, this is just a start as I dip my toe into this community... but I would like to hear from other people who are NTs and whose health is not good and have found their partners wanting in that situation because of their lack of empathy. Even though he tells me he loves me every day you begin to wonder what love is because somehow it feels like a mechanical habit as he always says it at the same time and in the same way... Gotta go now
Intense World - your advice sounds good in theory. If only I had a 'Nancy' to call on! As I said in a previous comment, people are too busy with their own lives to be able to spend hours with me at the hospital every month and it seems that even my most confident of friends do not like the idea of driving our adapted car and dealing with the ramp at the back. One friend came with us a couple of times after we had supported her through a bad patch in life and she took time off work. When she was there my husband was a different person so it made me think he should have married someone like her! I'm joking of course but may be she just was able to divert him more than I can and also she wasn't the one waiting for a needle to be stuck in her eye so she didn't need cheery chat for herself. However, if it's the bright lights of the hospital or just impatience that makes my husband grumpy when he has to wait with me he certainly wasn't affected on the day she was there. I've tried taking crosswords for him to do as he likes them but that was 3 years ago when my treatment started and before we knew about the aspergers. I couldn't look at the crosswords and came to a realisation that I had been trying to do these flipping cryptic crosswords all my married life just to please my husband and his family because they all love them and through one particularly crass remark of his when I suggested an answer to a clue I said, "That's the last crossword I do with you". And I haven't and I don't intend to and I think what a silly woman I have been all these years trying to do something that I hated just to please. When I told my therapist we both had a laugh about it because she had done a similar thing when she was young with her parents and we both said what a relief it is to let something go that wasn't pleasing you. And now the upshot is that my husband doesn't do them any more either! I used to cut them out for him and then I realised I was treating him like a child and making sure he had a 'toy' to play with while we waited and waited and waited. Now that he's got to get them himself he can't be bothered to even buy the paper.
Things are a bit better at the hospital now because we have got to know the routine and the staff and he's getting used to it - so am I.
As for complimenting him about jobs - I do that all the time but it still doesn't make him accept help. It has to be a fait accompli when I have to dig my heels in if I find it necessary. He's someone who needs loads and loads of praise because he didn't get any as a child. When he comes in from his long walk he 'demands' my full attention no matter whether I have my sister or a friend here. My sister said that he's like a child who has just come in from school and he has to tell me every butterfly and bird he has seen - which is nice and the day he goes for his long walks is his day to himself and it's my day for having my cleaner and friends/relatives if I want but you can see that if someone is here he doesn't like it. For many years my sister thought that he didn't like her but she understands now that it wasn't personal.
Yes I do Skype.
As for contacting the council - our neighbour works in the very department you refer to and sends us emails about respite care etc. My husband flinches at the very idea but I have thanked her and told her it's nice to know about these things. My husband has been told about carers meetings etc at our surgery but it's just not for him.
I can see that you are trying to give me practical advice and your input is useful. Thank you.