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I have ME, pils don't believe in it AIBU to ask them to stay away until I'm better

(64 Posts)
SunsetMojito Thu 11-Apr-13 15:12:22

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?

CrapBag Thu 11-Apr-13 19:34:05

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.

MoodyDidIt Thu 11-Apr-13 20:17:54

my best friend has ME

she has had it since she was 17, she is 30 now

it has, so far, completely robbed her of a normal life, she has lost so many friends / boyfriends etc who just don't believe her, and have tired of her not being able to do "normal things" sad she is beautiful. tall slim, trendy and gorgeous and people think because she looks how she does she is not really ill. she is so brave, funny and clever but many people just write her off.

it breaks my heart. why the fuck do people seem to have these prejudices about it??

anyway have derailed your thread a bit OP but yes your PILs are being real twats and they need to educate themselves.

CFSKate Thu 11-Apr-13 20:27:13

Do they know people die from ME?

If educating them would help

DVD film Voices from the Shadows.

Book by the same people - Lost Voices

A TV news report on how the drug Rituxan (used for rheumatoid arthritis) gave ME patients their lives back - people like Maria Gjerpe went from bedbound 21 hours a day, to walking 9 km and living normal lives. Now Maria is using her health to raise funds in the next 50 days for a phase 3 trial.

Tanith Thu 11-Apr-13 20:42:07

You say your PIL won't use the links: would they perhaps read "Diana's Story" by Deric Longden?

Diana was Deric's first wife and had ME in the 70s, when most of the medical profession didn't have a clue about it, either. It's an inspiring story that tells, among other things, how hurtful the scepticism was.

Both Diana's Story and Lost for Words were made into very good films; both starring Thora Hird. Julie Walters played Diana in the first.

CrapBag Thu 11-Apr-13 20:44:51

TBH with appalling attitudes like they have I can't see them being interested in reading and watching anything about it. They have shown themselves to be narrow minded and I highly doubt after the horrible things they have said they will turn around and say "oh yes we have read this, completely understand now and you are very ill." They will continue to be narrow minded about it because they think they are right in the first place.

IneedAsockamnesty Thu 11-Apr-13 21:02:22

Have nothing useful to add other than your pil's are giant cocks and your dh is fantastic.

thermalsinapril Thu 11-Apr-13 21:14:26

YANBU at all. What makes them think they know anything at all about M.E.? Very ignorant and rude of them.

EldritchCleavage Thu 11-Apr-13 21:14:29

§it doesn't sound as though your horrible PILs are going to pipe down. I can quite imagine that your DH doesn't want to sit through a tirade of poison every time he visits, and the DC certainly shouldn't hear it. So if they won't shut up, then that means no visits at all by anyone. Don't feel guilty, they've brought in on themselves. You know what they think, why do they have to harp on about it?

Gingerodgers Thu 11-Apr-13 21:23:44

I think they have to be understanding, but sadly so do you. ME is relatively modern, and controversial, so depending on their background, it might be completely understandable that they have this attitude. You need support, but so do they, in accepting that their daughter in law isn't just opting out. Good luck, I would give them another chance.

flaminghoopsaloohlah Thu 11-Apr-13 21:36:50

Ginger - you really think they need support? Are they completely incapable of asking questions, doing research? Do they need to be spoon fed the facts after watching their DIL probably shrink to a shadow of herself? They are ignorant and intolerant and bloody arrogant. ME is not as modern as you might thing - first identified I believe in the 1930's and by 1969 a recognisable illness with WHO.
their attitude that their son needs to "man up" in dealing with his wife speaks volumes about who these people are; honestly I doubt all the information in the world will change their minds because as far as they are concerned what they think goes.

The OP deserves way better - unfortunately, with these two, I doubt she will get the support she needs. Thank goodness for her DH.

SirBoobAlot Thu 11-Apr-13 21:44:02

Firstly, a big hug for you.

I've been ill for coming up six years now. It's still hard work, still horrific at times. I use crutches at all times, and have recently got an electric wheelchair which has made my life so much easier. I was bed bound for the first months, and then ended up sectioned when it was suggested that my symptoms were psychosomatic.

The first year was horrible. The reactions from family and friends was almost more soul destroying than being ill in itself.

The second year I had worked out that the people I still had left around me were the people worth knowing.

There is a chronic fatigue and similar illnesses thread on here in General Health, do come and join us.

Your ILs sound vile. Seriously horrible. The last thing you need right now is their shit.

LastMangoInParis Thu 11-Apr-13 21:46:36

When people go into this sort of bullying denial where they ostracise someone who is already in a horrible situation and very weakened and vulnerable, one thing that sometimes starts to shift their perspective is a similar experience - so being stonewalled/dismissed/derided when they need support or sympathy sometimes jolts them into some sort of acceptance of reality.
Which is not to say that you should stay in contact with them, Sunset - far from it, keep them far, far away so you can look after yourself. It's just to say that gentle attempts to raise awareness don't really do the job in these sorts of situations.

Pilgit Thu 11-Apr-13 21:53:19

sorry, not read the entire thread. You do not need to apologise for your illness. Just because medical science doesn't fully understand ME doesn't make it any less real - diabetes wasn't always understood, ditto asthma, cancer, etc. You don't want this illness and what they are saying is that you want it and are enjoying it! Bet you're loving every minute of the debilitating fatigue, the inability to get yourself to the shower and be clean and the fact that doing anything fun is more effort than you can muster in a week. Utterly ridiculous. Good on your DH for being un-compromising about it. YANBU to tell them to bugger off permanently. It would be forgivable to have this atitude prior to you having the illness - but if they know and love you that should have changed their minds about it.

Sorry a little too much vino has brought out the strident indignation in me...!

SunsetMojito Thu 11-Apr-13 22:39:46

Thanks guys. I'm really quite overwhelmed by your support.
FIl is now denying that he made the awful comments to me and that has been really quite upsetting.
Like most folk pils aren't all bad. They are good at practical help with the dcs although that has to be done their way (but that's OK with me as long as its not dangerous). Their attitude may stem from fear but I'm not able to help them work through it even if they wanted to. Of course they don't.
I've shed so many tears over pil's attitude to me but seem to have finally found some strength to set a line to protect myself. I really appreciate your support.

SunsetMojito Thu 11-Apr-13 22:41:50

Pilgit they've known me 20 years. In that time I've been a keen fell walker, runner, worked hard all my life, had a job I adored, wonderful dc, lots of friends and generally been an extremely happy active person.
Until the day it came crashing down.

flaminghoopsaloohlah Thu 11-Apr-13 22:55:44

Ignore the gaslighting OP. Common tactic...denial is a controller's friend.

Big hugs to you.

CleopatrasAsp Thu 11-Apr-13 23:50:26

What a pair of ignorant bastards. Well done to your DH, he sounds like a sweetheart. The truth is you find out who your friends are when you experience something like this.

Cherriesarelovely Fri 12-Apr-13 00:06:59

I am so sorry to hear about your situation OP. Of course you are not being U. Thank goodness for your lovely DH and kids. I am just recovering from a mystery virus which affected my heart, joints and gave me chronic fatigue for 15 months. It was absolutely horrendous and the worst part was feeling as if people did not believe me. In fact all my friends and family werefantastic but one or two Drs were vile to me and it made me feel absolutely wretched. Do you have a good consultant? I think that makes such alot of difference. First and foremost,this is NOT your fault, it is real and you didn't give it to yourself.
I know you must be feeling utterly frustrated but really try to take the rest you need and avoid people who "don't believe" in your condition. They are ignorant. Science is starting to catch up and more and more is becomming understood about M.E. all the time.

I send you huge hugs. Keep posting on MN for moral support and don't let those Pils grind you down.

Cherriesarelovely Fri 12-Apr-13 00:10:58

I was also a really keen runner Op, a totally energetic, upbeat person. Not being able to be like that and not knowing when that "me" will return has been hideous. So happy to tell you that I am finally doing some walking and some yoga. May try a run if things keep going well for the next few weeks. Just want you to know there can be a light at the end of the tunnel.

coreny Fri 12-Apr-13 00:16:28

OP you've hit the nail on the head - they don't want anybody to 'help them through it' because that would result in their understanding the nature your illness, which they are not prepared to do.

CrapBag Sun 14-Apr-13 21:07:31

Its funny (not in a ha ha way) but I was also very fit and active before. Loved going to the gym, aerobics and swimming as well as walking to and from a full time job and out with my friends at weekends. Then it got the the point where I struggled to get off the sofa and it all went downhill from there.

I have read before that a lot of the time it seems to be fit and active people who get it. Odd.

Letitsnow9 Sun 14-Apr-13 23:35:15

Can I just say its nice to see people's nice responses on a public forum instead of the insults that normally come online when M.E gets mentioned smile

JustinBsMum Mon 15-Apr-13 06:47:11

My DS had help from Mickel Therapy though it doesn't work for everyone and is expensive.

TheDoctrineOfSnatch Mon 15-Apr-13 07:08:30

It's perfectly fair for your DH not to see them or take the DCs to see them unless they are prepared to keep their bad opinions about you to themselves. That would be true whatever caused the differences of opinion. You are not at fault here.

CFSKate Mon 15-Apr-13 09:28:14

Can I just hijack and ask all you ME people to add a vote to stay in place to win £2000 for ME research?

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