to think people should know better

[notthatshesaid]

Just a rant really, as I can't tell people in RL.

I lie in bed all day, every day, not all the time, but about 80-90% of my week is spent like that. I get so many people, generally when I first meet them, tell me I'm lucky. 'It must be SO nice lying in bed all day,' 'it must be great not having to work,' 'urgh, you're so lucky getting to do whatever you want.' These are nice, friendly, intelligent, educated professionals, many of whom are now good friends of mine.

I don't get it!!

I have M.E. It really has destroyed my life. I missed most of my secondary education. I was hospitalised for long periods where I was bullied by nurses and doctors (and on one occasion was sexually assaulted which absolutely destroyed me). I made it to university but despite having a fabulous time had to drop out because I was too ill to cope. I have had many painful surgeries (other health issues) which have been very demoralising and traumatic and painful. Six years of my twenties were spent completely housebound. I knew no one at all other than my parents. I have had one relationship because of this, although I have recently met a new partner which is really great.

I can't have children, I've lost many friends over the years. I haven't been able to have a career, when I wanted one very badly. I have been able to go on holidays which has been absolutely great, but these holidays have mostly been spent in bed. We're talking an hour on the beach per day, the rest of the time lying in a darkened room.

Because of the above I find it really, really hard when people tell me I'm lucky. I'm a smiley, friendly person because I just want to enjoy the time I get out my house, and because no one wants to be friends with someone moany, so I know it's partially my own fault I get people say this to me. It can probably look like I'm having a great life. They just can't see how much trauma I've experienced. But really, who says to a disabled person 'you're so lucky not having to work/getting to lie in bed.'

I want to scream 'I WANT TO WORK!' I want to be healthy. I want to have children. I want to go out hiking, and bike rides, and go swimming, and go out for drinks and stay out beyond 9pm. I want my life back. That isn't going to happen. It really upsets me, and I'm baffled people are so ignorant. I don't think it's people trying to empathise or just make a nice comment in passing, I really don't. They genuinely seem envious of me. Some 'friends' have made so many comments it slips into hostile comments and I've had to cut them off. I could cope if they were just trying to make me feel better about my situation.

Why are we so rubbish at dealing with disability? AIBU to think that people really should know better? It's not rocket science. You don't go up to someone in a wheelchair and say 'lucky you not having to walk anywhere'.

It's an awkward situation and difficult for people to know what to say. If they said nothing, another person in your situation would be offended at having their condition ignored. If they sympathised then another person might feel they were being pitied.

These people aren't saying these things out of badness so try to shrug it off and move the conversation on.

ME seems to be one of the most misunderstood illnesses it could be that they just dont understand the dibiltatingness of it all. They look for the positives and try and use these to show support "but you can do X,Y,Z". Its like when people are infertile and friends say things like "oh god you are so lucky you can have fancy holidays and lie ins etc"

Of course you would swap it for normality. However these friends probably feel really helpless abd are just trying to find positives.

Yanbu
I can't believe anyone tells you that you're lucky to be ill?
What the hell is wrong with these people?

That is so so awful. Have you tried actually screaming that ? It might not change their mind but it might help you !

YANBU. At all. It's sad because many people react to difficult situations by trying to point out positives. They think they are being helpful. It must be so hard to hear what they say and you probably have to smile and nod, while wanting to shout at them.

I experienced something similar when two of my children were diagnosed with a disability - one an illness, the other a neurological condition. People would say the most astounding things to me which showed they had little understanding and were afraid to sympathise in case I started crying. Or I think that's what it was. I'll never really know.

You could still smile when you give your response, but how about saying something like 'no, not lucky, I would love to have the freedom and health you have.'. Then leave it there for them to mull over a while.

People tell you you're LUCKY? Crazy. I'd rather be at work then bed bound :-(

YANBU.

Sounds like they're not stopping to think about the huge, huge difference between lying in bed because you want to, and lying in bed because you're not capable of getting out of it.

And you're right. They should know better than to say this. It takes very little thought to realise that such comments are insensitive at best.

Sounds to me these people are trying to highlight a 'positive' in what they know must be an awful situation. Looking on the bright side and all that rather than a pitying 'oh that must be terrible. Your life must be horrendous.'

It comes from people not knowing what else to say. I expect if they thought about it for more than a second they wouldn't choose to trade lives.

There is awkwardness around anything that people have little understanding of, like disability or bereavement or mental health. It's such a shame, and I wonder if it's a British 'stiff upper lip' thing or if it happens a lot in other countries too.

That must be horrible for you, and is really thoughtless of them.

Maybe what you need is a few friends who are "on your side" with this and can help you bat away comments from other people?

If you can manage to share at least some of what you've said above with one or two of your closest friends - including how the comments are making them feel - and specifically ask them to help you out with tackling the comments from others, they can then help to deflect them. Plus if it comes from them rather than from you, you don't have to worry about whether you sound moany. Maybe try to pick a neutral time to talk to your friends, not just after someone has said something, so it doesn't seem like you are complaining about them, just asking for help. You certainly deserve someone to stand up for you!!

Thank you! The thing is some people do try to say stuff to make you feel better and even if they get it really wrong I'm always aware it's well intentioned. Heck I'm sure I might get it wrong about their issues. The thing I'm talking about isn't someone trying to be nice or fill an awkward silence, they genuinely seem envious. I know the working world must be tough/boring/horrible at times, but my situation still isn't something to be envious of. I just don't think they see past me looking relatively well (sometimes I do a fantastic impression of a healthy person) and of course occasionally I do get out to do fun things so I think they just don't stop to think about all the bad bits. But there are so many bad bits.

It's really helped just to hear other people say it's unreasonable. I hate that people don't know what I've been through but equally I don't want to bring it up. But it might be worth talking to friends more openly. I have tried to when I get these comments, but I've usually just received blank stares.

I think I'm a wee bit extra sensitive at the moment. I'm having counselling for some of the stuff I've gone through and it's playing on my mind even more. It's hard when someone then treats you as if you're having a whale of a time, when really you're quite jealous of them. Just having a good old rant has helped.

It's because your illness is invisible. If you can't see a disability, it doesn't exist right?

I don't know what the answer is - I think I'd be biting their heads off by now!

That's definitely a very large part of it. There's no way of describing it adequately either, especially because m.e exhaustion is not normal exhaustion.

Why on earth would anyone say you are 'lucky' and must be 'great to lie in bed all day' I just don't get it....

people say it because when the alarm goes off you and you are tired, there is nothing that sounds nicer than staying in bed....

they don't realise that while yeah its great to stay in bed for a couple of days cos you want to, being in bed because you feel like crap and are 'forced' to, its not fun at all

Have you ever looked at AYME?

Ayme.org.uk

It's the association for young people with ME/CFS

They have dedicated chat forums for youg people, over 25's and parents.

You have my sympathies, my 13yr old dd has CFS and I know what a soul-destroying condition it is.

Uuurgh i hate this kind of ignorance.

Like when you're depressed and you stayed in your pjs all day and didn't shower and people say "oh that sounds nice!" Well it wasn't. I wished i was dead.

People mean well.

I have M.E too, so can totally relate :( I have this issue with people too, calling me 'lucky' - YANBU!

These would probably be the same sort of people who get jealous of others' access to motability cars ("free" cars, you know )
They just can't cope with the idea that someone else has something that they perceive to be a "benefit" - in your case, getting to stay in bed all day.

But that just shows them up for their utterly stupid views - if they can't work out that you are disabled by your illness, and that no one would honestly choose to spend 20+ hours a day in bed unless they were forced to, then it says a lot more about them than it does about you.

I'd have a little spiel ready for next time someone says it - offer them to swap places, they can take your debilitating tiredness and pain, and stay in bed all day, and you'll have their life for a day. Go a bit heavy on your own experience, so they get the point. :)

I can relate. I have been too ill to work for the last 4 years. I have lost friends because of my illness, no one wants to know me when they hear what I am facing. People distance themselves from me.
I often am too exhausted to leave the house.
As a result of treatment 3 weeks ago for a new condition (because the 3 I already had were not enough - I am obviously just greedy!) I have been on bedrest for 3 weeks. I can't get off the sofa without feeling very sick and dizzy and feeling like someone is hitting me around the face with a baseball bat. So the treatment to make me better is making me feel worse...
This is on top of what I was already dealing with health wise, which is so bad it has triggered depression.
I am facing major operations, and I am not sure I can face this any more.

And still when I talk to people they will say things like, well at least you don't have to work.
The thing is, I want to work! I want to be well. I want to be well enough to return to the job I worked so hard at university to get. The job I trained long and hard for. The job I was very good at. The job I lost, not because I was incompetent, but because I have 2 genetic disorders that have caused me to have horrible medical conditions.

You sound so brave and cheerful, trying to make the best of very difficult health problems. I admire your courage OP. These ignorant people are the pits. It sounds a bit nasty, but I almost wish they could experience something similar in the future, then they'd understand!

Thank you Hate. I have a lot to be very thankful for, genuinely.

Sorry other people are in the same boat. And Thumbwitch, will try that. I did once say similar to two people who said this to me that it was a bit different choosing to be in bed all day, compared with having to but they were blokes and I got this blank, confused stare which made me feel very sorry for them. I don't like distressing inferior beings.

Weird, thank you, I used to be a member of AYME and have made good online friends through it who save my sanity. They get it. I'm so sorry your dd has it, it's very tough to be young and unwell/different from your peers. I hope she recovers.

I was feeling pretty peeved earlier, and it's really helped writing here so thanks. I just generally hate how much I've gone through and it's totally invisible to everyone.

The only thing I think you're lucky for (and I don't think it's luck!) is that you're strong enough not to have kicked off at them about it yet. I don't think I could hold back, I'm sorry OP, YANBU they are being VVU and ignorant.

YANBU. You have my sympathy. I suffered from ME as a teenager. My health has improved a lot since then but I still sometimes have bad days. It is completely insensitive of someone to say that you are lucky to be in bed all day! It is like telling someone in a wheelchair that they are lucky they don't have to walk everywhere! They have no idea! People tend not to understand ME because it is an invisible disability. I recommend www.butyoudontlooksick.com/ it's a good support/information resource for people with invisible illnesses/disabilities. They have an article about the spoon theory, where the author uses the metaphor of a limited amount of spoons to explain her limited energy levels to a friend.
www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

They also have a Facebook page:
www.facebook.com/bydls