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?

flaminghoopsaloohlah Thu 11-Apr-13 15:16:24

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.

Goldmandra Thu 11-Apr-13 15:18:04

Maybe your DH should rethink and suggest that they see the DCs on their own as long as they undertake not to discuss your illness with them?

coreny Thu 11-Apr-13 15:18:32

God they sound awful.
They are being negative to your dc's about you, which is absolutely wrong, whatever their personal opinions may be.

Mumsyblouse Thu 11-Apr-13 15:18:48

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.

coreny Thu 11-Apr-13 15:18:50

yes I agree that your dh sounds fabulous

HungryClocksGoBackFourSeconds Thu 11-Apr-13 15:19:50

Ask them to watch this

I'm sorry you're being treated like this, it's absolutely vile. Glad you have a supportive DH.

neriberi Thu 11-Apr-13 15:32:08

Sunset there's a really good thread in general health about spoons & fatigue, the ladies over there are lovely & will handhold grin

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 Thu 11-Apr-13 16:08:49

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 Thu 11-Apr-13 16:12:25

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 Thu 11-Apr-13 16:16:13

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.

coreny Thu 11-Apr-13 16:18:47

They sound horrible.

You don't need negative, ignorant people in your life when you are so ill.

You aren't coming between dh and his family at all - their ignorance is.

SunsetMojito Thu 11-Apr-13 16:22:16

Hungryclocksgobackfourseconds - that link is great. Thank you.

SunsetMojito Thu 11-Apr-13 16:25:13

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 Thu 11-Apr-13 18:27:50

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 Thu 11-Apr-13 18:35:33


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 thanks

fuzzpig Thu 11-Apr-13 18:38:34

Oh and absolutely agree that NONE of this is your fault. How on earth can it be your fault that they are arrogant, ignorant arses.

LastMangoInParis Thu 11-Apr-13 18:49:54

Another voice to say YANBU...
You have my sympathy: nothing like a couple of bullies who think aggressive denial/bullying will make you magically 'buck up' to make everything worse. Keep them away.

diddl Thu 11-Apr-13 19:00:06

I doubt I'd be able to get over that & ever see them again tbh.

Well done to your husband-if he's OK with not seeing them-let that be how it is.

Your children won't lose out by having no contact with such people, either.

Snog Thu 11-Apr-13 19:04:08

Your PIL ABU and toxic
Definitely don't see them while you are feeling vulnerable

SwishSwoshSwoosh Thu 11-Apr-13 19:07:21

I think your DH is right, they have an appalling attitude and you have done nothing wrong. You'd all be better off without them for a bit I think.

Groovee Thu 11-Apr-13 19:07:53

Invisible illnesses are very hard to get people to believe. I have fibromyalgia.

We no longer see dh's brother and his wife and family after their toxic behaviour and it's so much easier.

Glad your dh is being fantastic as it can be hard for them.

Corygal Thu 11-Apr-13 19:08:47

yr PIL are really unpleasant. Well done DP.

I would avoid them, well or not. In fact, the clearer you steer the better.

Do take care and get better soon. thanks

AThingInYourLife Thu 11-Apr-13 19:15:50

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.

DoctorAnge Thu 11-Apr-13 19:16:27

From someone who also suffers from a crippling invisible illness I offer you much, much empathy for what you are going through.
Concentrate on yourself, your family and your recovery.

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?

SofiaAmes Mon 15-Apr-13 09:42:58

Have you explored Functional Mitochondrial Disease as an explanation/cause of your symptoms. High doses of L-carniitine and CoQ10 could possibly alleviate or eliminate some or all of the symptoms. This treatment has turned my very sick child who could sleep 16 - 22 hours a day when he had a cold, into a strapping healthy young man. Here is a website with lots of information: http://www.umdf.org/site/pp.aspx?c=8qKOJ0MvF7LUG&b=7934637

SofiaAmes Mon 15-Apr-13 09:44:03

Oh sorry, didn't do the link right. Here it is again.

MrsMangelFanciedPaulRobinson Mon 15-Apr-13 10:05:51

Oh my word they sound awful! I'd totally cut them off!

Soupa Mon 15-Apr-13 11:20:09

Hope they try and make this better. You must do whatever suits you most.

Hope you improve soon too, I had ME and when I recovered suddenly and fully it was incredible. Had one relapse but have been clear for years... your turn nextsmile

CrapBag Mon 15-Apr-13 11:25:56

Done CFSKate. Good to see ME is at the top with votes.

formicaqueen Mon 15-Apr-13 12:50:05

on a totally different line of thought, have you googled gluten/diet and ME?

Formica my dSIL has ME and finds a reduced gluten/dairy diet helps hugely.

OP my parents are sceptical of dSIL's condition but have never, never expressed any opinion to her, and have helped on occasion (live far apart).

They did say something once and I made a comment along the lines of "well the Social Welfare people believe she has it or she wouldn't be on disability, plus several doctors believe her, where's your medical degree?" and they haven't commented to me since (prob out of fear of getting their noses bitten again rather than understanding)!

If your DH is explaining things to your PIL's and they are still behaving like shits, then I think it is time to pull back massively. If they can be that toxic to you, you don't want them round the DC's - imagine if one of them had an invisible condition that PIL's didn't 'believe'' in? (God forbid they should, of course)

I mean God forbid they should have a condition, not God forbid the PIL's wouldn't believe in it!

shouldkeepquiet Mon 15-Apr-13 13:58:30

My wife has had CFS and Fibromyalgia for 17 years. The biggest trigger for her to have relapse is stress. She has gradualy got to the point where she is now working 3 mornings a week in a school but has to try and avoid getting wound up or angry at all costs as it sets her back massively. With this in mind i would suggest you avoid you PIL for as long as possible - forever maybe - as it is making you worse.

CleopatrasAsp Mon 15-Apr-13 19:47:57

shouldkeepquiet if your wife is so severely affected by stress has she had her cortisol levels checked?

shouldkeepquiet Mon 15-Apr-13 21:07:00

Hello Cleo,
No i'm fairly sure she hasn't. She gave up on doctors and test after being told there was nothing wrong with her for years. She has been taking a lot of different pils for the last couple of years and it seems to be working.

CleopatrasAsp Mon 15-Apr-13 23:56:24

That's great that she's feeling better. I have had ME/CFS for over 20 years and kept well away from doctors but a few years ago I had to have a routine blood test and it was discovered I can't produce cortisol (the anti-stress hormone). They reckon I have probably been like this for years and this is why I also have ME as it thrives in a stressed out body. There has been lots of research recently linking problems with the endocrine system and ME, so it's worth considering.

OhLori Tue 16-Apr-13 09:51:44

Sounds awful sad. One option - let them stew in it for a while. Meanwhile, just "use" them for childcare if you need to and keep your distance, especially emotional.

Another alternative is to have a long talk with them yourself quietly, not an argument IYKWIM. Just tell them you are really sick physically and it is a struggle and to be told that its imaginery is very upsetting as well as being untrue. Their response is irrelevant (hopefully they won't say much) as the main purpose is for you to get how you feel across - if you are forthright and sincere it may help the situation a bit. Though of course no guarantees.

CFSKate Tue 30-Apr-13 22:43:08

There is just over an hour left to vote, please if you can ask anyone else to vote please do so, a handful of votes could make all the difference, we are in 1st place, but only just.

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