I have ME, pils don't believe in it AIBU to ask them to stay away until I'm better
SunsetMojito · 11/04/2013 15:12
I've bed bedbound for 5 months, housebound for 9 months, now leading a limited life with lots of rests. But still very weak and poorly.
pils have kindly helped with the dcs one day per week for a year (except for some long holidays of theirs) which I am very grateful for.
Unfortunately they don't believe I am as ill as I 'make out'. They have told me to pull myself together, just go for a long walk and other things that have indicated that if I just tried harder I'd be better. Sadly dd overheard them saying they don't believe I can't even get to some gardens and has been very very upset which I've found heartbreaking as its hard enough for her having a poorly mum anyway.
I've got to a point where I couldn't cope with the stress and that the cost was too much to bear in terms of making my illness worse.
Dh and pils had a huge row where they let rip all their views about the illness being imaginary and they weren't prepared to 'play the imaginary game' (their words) any more. they aren't prepared to see me any more but want to see the dcs. Dh says that we come as a family and they can't pick and choose.
But even if they opt to see all of us, and I really don't want to come between dh and his family (and I hate family rifts), I feel as though I just can't face seeing them until I'm stronger. I may well be being oversensitive as its been such an awful time and I feel quite battered by it all and obviously I've lost a lot - freedom, job, financial security and quite a lot of dignity along the way.
AIBU to cause all this upset by not being able to cope with seeing them until I'm better?
flaminghoopsaloohlah · 11/04/2013 15:16
Er...you've "caused" nothing. And wow on your DH...what a fabulous partner he is.
You are an essential part of your family - having toxic people around isn't going to help your recovery.
Let your DH stand by his convictions in supporting you and telling the PIL how it is.
Mumsyblouse · 11/04/2013 15:18
How awful! Glad your husband is behind you though. Yes, I think I would keep out of the way of them at present. But surely it's partly up to your husband as well- is he happy to take the children to see them? I would be very reserved about them seeing the children if they are going to say negative things about you, and meeting up has to be on that basis.
neriberi · 11/04/2013 15:32
Sunset there's a really good thread in general health about spoons & fatigue, the ladies over there are lovely & will handhold
You are most def not being unreasonable, I have complex health issues & suffer with extreme fatigue & I can't think of anything worse than facing people who "don't get it" so I don't.
moisturiser · 11/04/2013 16:08
It's so crap when you not only feel ill but you have to deal with ignorant people judging you.
I think you're perfectly within your rights not to see them. What I would do if I was you, is I would buy a copy of 'Voices from the Shadows' and get your DH to give it to them. There's also a video on youtube 'the world of one room,' both of these are quite eye opening as to just how horrendous M.E can be, and in recent months some quite hardened fucking ignorant people have come around to the reality of it, including lots of M.Ps. Voices in particular I'd give to anyone who didn't understand.
I really hope you start making some improvements soon. It is such a horrible illness, and as you say, you lose so much.
Letitsnow9 · 11/04/2013 16:12
I was going to say voices from the shadows too, 3 friends of mine are in it. 2 are dead. The DVD is fantastic and has a mixture of people's experiences of severe M.E and one of the top specalists from around the world explaining its neurological and how awful it can be
SunsetMojito · 11/04/2013 16:16
Dh is amazing. I'm very lucky. I'll pass on the compliments to him. He is horrified by his parents behaviour and we've tried him taking the dds round without me but then they fill his head with criticism of me. They also criticise him for putting up with it. They've said he's not a man for not getting tough with me.
Thank you for the support though, I was expecting a tougher response than that. I am prepared for criticism though as I know I am a bit sorry for myself at the moment.
Thanks for the links. They would never watch anything like that in a million years, but thanks anyway. I appreciate it.
SunsetMojito · 11/04/2013 16:25
Coreny - thank you. I've never thought of it like that but I believe you are right. It is their ignorance.
I've been very fairly treated by the medical community and my neurologist who diagnosed me warned me that I would find out who my friends were in terms of who believed me.
My friends have been wonderful, offering love, help and support to us all, taking my dds out, having them for after school, cooking for us, ironing, sitting with me and holding my hand when I couldn't talk. So I'm lucky in many ways.
flaminghoopsaloohlah · 11/04/2013 18:27
A lot of people don't "get" illnesses that you can't physically see either with the naked eye or with some sort of test...they can be extremely narrow minded about it, just like you PIL's. If a bit of education doesn't change their minds (and YNK it might, which would be great) then you have every right to stay away and if the DH decides he wants to do the same that's up to him - filling his head and your DC heads with their narrow mindedness is toxic.
I had a friend with ME - one of the nicest people you could ever hope to meet - she was ill for a long time. We used to take turns helping her take a couple of turns around the playground etc until it got to the point when she couldn't' come to school. then, one day, she woke up and just got up. It was fantastic. She now leads an amazing life. Don't lose hope.
fuzzpig · 11/04/2013 18:35
Having an invisible disability is very tough. Unfortunately ME in particular has attracted a lot of controversy and criticism in the past. It is horrible that some of your family is not standing by you. I'm glad to see your DH is though.
Spoon thread here if you want to join us
AThingInYourLife · 11/04/2013 19:15
I think your husband's initial reaction - to cut them off from your family - was the right one.
The things they are saying to him are just poison.
It is not good for your children to be around people who think that way about you.
I don't "get it". I've never known anyone personally with ME.
To be so unwell and have family accuse you of malingering seems so unfair.
I really hope you continue to feel better.
But even if you do, I think your relationship with these unkind bullies should be over.
CrapBag · 11/04/2013 19:34
I have M.E. as well and its fucking awful!!! I have had it for 11 years and there have been close family who haven't believed it. My dad nick named it 'lazyitus' until he saw me collapse in the street and he had to hepl DH get me to the taxi and back to the villa (we were on holiday). He looked panicked and never questioned it again. Another close family member knows and accepts it but still doesn't think it is bad. I do live a fairly 'normal' life to some people but I can't work and haven't done for years now. I was talking the other day about how I would love to work at certain jobs and he still says "well why don't you do this then?" He means well but he doesn't get that I can't do any job (although according to someone ticking off a sheet I have now been declared fit for work and been put in the WRAG for ESA, fucking brilliant).
Yours PIL can fuck right off. For a start they have said stuff in front of your DD so she may be questioning it herself. Well done on your DH for standing up to them and like someone else said, I wouldn't be able to ever forgive them after this. It must be nice for people like them who clearly have their health and have no idea what its like to have a horrible illness that people constantly question. Do people really think that we want to be this way? I lived a very active life before, I loved exercise and doing things like bowling and now I just can't. It certainly is not what I want to do in life however you have to get on with it.
YANBU, they can stay away and certainly not see your children without you ever being involved. They brought this on themselves so they can bugger right off.
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