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Feelings of resentment - Page 2 - Carers UK Forum

Feelings of resentment

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Thats lovely, hope you have a really lovely time Image sure beats crochet x
It's such a difficult situation, isn't it? I think there's a real mix of emotions slewing around. Somewhere in there I suspect is a form of 'survivor guilt',whereby the 'non-ill' person feels 'bad' that they are OK, and their partner is not. (My own background is my late husband being diagnosed with terminal cancer, just to put my comments in context).

We can feel 'guilty' that it's them, not us, who are ill/disabled. And we can feel 'guilty' for (this is 'unsayable', but not always unthinkable...) that we are 'relieved' that it is them, not us, who are ill. And we can feel resentful if they resent the fact that it's them who are ill, not us, and that they are trying to 'limit' us, ie, make us behave as though we were as ill/disabled as they are - a sort of 'forcible Munchausen's by proxy' almost! (As in 'Yes, you're not as ill/disabled as me, but to even things up I'm going to insist that you behave as if you are, to equalise us').

My husband was just about the opposite of that, and felt bad that he was limiting me - he kept encouraging me to go out with my chums to 'get away' from being 'stuck at home' with someone with terminal cancer.

Your husband may be similarly tormented, but not able to show it or say it? Or he may be in some kind of 'denial' maybe, whereby he may feel that if you BOTH don't do some activity, then it's beause neither of you 'want' to, etc etc. The mind twists and turns all over the place when illness and disability strike.

But the brute truth is that it is no one's 'fault' that his activities are limited by his condition - and it is not your fault that your activities are not so limited! Does he think you are 'disloyal' if you want to do something he cannot? Or does it just reinforce, savagely, his own limitations? (so he'd rather not see you doing it either, as it only brings home to him that he isn't able to do it?0

Whatever the mental twists and turns, I would agree with the others that you do, still, have a right to do things you are able to do but he can't, but perhaps not to 'ram it home' to him that he can't do it, ie, maybe limit your self as to what you do? Are there any in particular you have in mind that you would like to do, but feel 'repressed' by him for wanting to do?

In principle, though, I would think most couples have differing tastes, and the secret of a good marriage is to let each partner indulge in each 'equally', and that can work very well. Sometimes we have to compromise and do less of what we want to do, and sometimes share what we don't want to do (I used to drag my husband to the theatre - not often,but sometimes!)(He dragged me to Brands' Hatch!)(I took a book and sunbathed - very pleasant!)

I hope that you can find a similar compromise with your husband in such a difficult situation for you both.

By way of PS...

Just wanted to ask, but of course, please don't say if you don't want to, how come your got what seems to have been such poor genetic counselling? Did they not explain in detail how your husband's MD might affect children, and how the inheritance worked (you don't say what kind of MD, and I know there are various types, with various genetic defects), so that you would, at the least, know the odds clearly?

Sadly, with genetic diseases, until the doctors can really come up with a cure, it would seem that the only way to eradicate the disease is to breed it out of the population, by 'controlled conception' (or whatever)(eg, IVF from pre-screened eggs/sperm, embryo selection, etc etc) so these dreadful afflictions can't go on causing the misery and heartache that they do now.

That said, I do very much hope that as your little boy grows up, he will be in the generation for whom gene therapy truly comes of age.

Kind regards, Jenny
My partner was diagnosed with congenital muscular dystrophy and they were unable to locate the faulty gene. It was assumed, quite reasonably, that the MD gene that he had was a recessive gene and therefore if I didn't have it then it would not be passed on to the children (except perhaps in a recessive form). Recently however an old muscle biopsy, taken 30 years ago was re diagnosed and the conclusion was that my partner has Bethlem Myopathy, a very rare form of muscular dystrophy. I'm not resentful that this wasn't picked up at the time. I'm soon going to be studying human bioscience and therefore I know only too well the speed of the progression of this particular type of research. Next week we may have a greater amount of knowledge.
Oh dear, it shows just how complex such matters are....very much hope that new research can help in a practical way for your husband and son.

And at least now the docs know what they are dealing with, and perhaps even more importantly for your son, he can have a much clearer idea of just what degree of risk he faces in terms of his own future family.
absolutely. x
Hi and welcome,

Good advice from Sussexrokx and She wolf.