to think that if you're well enough to do this, you're well enough to work?

[Tianc]

Yes, IABU.

For those who don't understand fluctuating health conditions, here's disability campaigner Kaliya Franklin giving an articulate and energetic speech at the Hardest Hit Campaign (second video).

And the third video on that page is Kaliya the day after. So exhausted her speech is slurred and she struggles to form sentences.

So when you read yet another news story - and they're all the rage - about someone on disability benefits being seen walking or swimming or going out with friends, do remember the full picture may be really rather different.

I often saw DHs friend and collogue at the pool after toddler swimming.
Swimming and the gym helped him with his depression. Being forced back to the job that had caused it certainly wouldn't have.

A depressed person! Having fun! How very dare he!

My mum has ME, and some days you'll see her prancing down the road swinging the GCs in the air, and the next day you wont see her at all as she can barely make it out of bed and down the stairs. It's all individual IMO.

I imagine lots of disabilities are improved with exercise. You can't see how many pain killers people take, or what kind of recovery they need after exercise.

People do so love to Judge and condem others.

Yes. Very good point.

There are people who seem fairly normal, but who have had to really psych themselves up just to get out of the house, and are really feeling sick and scared inside, though they try and make a go of appearing normal.

Maybe they manage this twice a day because they have to.

Maybe once they get home, their house is a tip, they can't bear to answer the phone, they have no friends and no food in the cupboards because they can't stand the idea of going to a supermarket, or even having someone knock at the door, because they'd have to converse for a few minutes, or might see someone they know.

And maybe they are really capable of practical stuff, or admin, or research, but if they had to go and do it as a job among other people their world would crumble as they stopped sleeping or eating from the awful anxiety that being around others can engender in them.

Some people are ill. You can't know just how they live until you are in their shoes.

And of course, unless you visit their home, you'll only see a fluctuatingly ill person on a better day, or better half-hour that they've psyched themselves up for.

I want to go Xmas shopping this week, but I'm sitting in waiting for a good day.

I am so glad to see this point. I am currently really struggling and going to the GP today to ask about maybe being signed off for a bit.

I am 13 weeks pregnant. In my last pregnancy, I developed OCD which I kept hidden from everyone except my dh who didn't really understand why I was behaving as I was. I became obsessed with germs and contamination and wouldn't travel on a train expecting dh to travel 40 miles out of his way so I wouldn't catch swine flu . I have taken steps to deal with this more proactively this time and am getting help but somehow dealing with the OCD symptoms has revealed to me that I am actually suffering from depression and I realise now that I have been for quite some time. I didn't even see it but I have gradually isolated myself from a lot of people in my life and have found doing everyday things like washing and dressing extremely hard, let alone housework. I doubt anyone can see this on the outside though.

My case is pretty straightforward. I grew up in a chaotic, often violent alcoholic home where there was also a lot of virtually criminal neglect. I have learned to manage really well even when I am feeling really low and put on a face to meet the faces that I meet. I find it hard to keep up all the time though and it is only now, in my mid-30's and with children of my own, that I am able to see that really some of what I've experienced has had this effect on me. Normally I manage well enough, tipping along, coping. But when my defences go down physically, as in pregnancy, I find myself quickly overwhelmed.

I have a long way to go in terms of being able to say this aloud to anyone other than a health care professional and I am scared of being open about it.

I gree OP. My sister has Lupus and is on disability benefits....some days she is like a whirwind and cleans the house from top to bottom...others she lies on the sofa and can't even get herself to bed.

Tienc that's what my sis does..waits for a good day. If she's ery lucky she might get two or three and if not, then she gets no good days for months.

I think you are right to be cautious about being open about it.

I don't disclose my true mental health or state of mind (or house, normally) to anyone apart from my own close family. It's a dangerous thing to do when people are unpredictable in their response to something which they do not fully understand.

I would speak to your Dr, tell those in your family and closest friends that you can trust, and keep everyone else well out of it.

I've no idea what people assume about me but I know it's unlikely to be the truth and most are too polite to ask.

I am very sorry about what has happened to you in your life, Working, and I can understand what you are describing. It's Ok, it's not your fault.

Good luck xx

Jane, very good advice, the same can go for physical issues.

Is your life how you described in your post?

Yeah, that's another problem, Whoopsy. It's all very well waiting for good days, but sometimes it's months before you get one good enough.

Meanwhile the tasks are mounting up. Sure, some were non-urgent and could have been left for a week - but not for a month. And anyway one good day is nowhere near enough to get through the backlog.

Disability isn't always about walking you know! My son gets DLA, and he can walk, dress himself and drive a car. And he works.

Well said Tianc

Please if you have the time, read this story:

www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

The Spoon Theory is a great description of what it's like to have a disability where what you can do is limited even though you may appear well. Of not being able to do what everyone else can no matter how much you may want to. I've shown it to people in the past who believe that even if they became ill their spirit would triumph and they would carry on exactly as they did in the past, implying that I was somehow deficient in spirit for accepting my limits.

I was just going to mention the spoon theory.

ISayHolmes, that exact theme of has come up on another thread today, about cancer treatment being talked of as the spirit triumphing/failing: AIBU to think Cancer Research should rethink some of their marketing?

Lots of victim-blaming out there (tho not on that thread).

I like that spoon theory. I've never heard of it before I found Mumsnet, but it makes so much sense. Spoons is what I deal with when my asthma is bad, it's been so helpful to be able to explain what it's like.

I would just like to offer up this excellent piece

diaryofabenefitscrounger.blogspot.com/2011/10/we-all-know-someone-who-could-work-but_31.html

I've just read Spoons and I'm crying

I wish everybody could read it and then maybe they'd understand. I'm good at hiding things with the help of painkillers and bloody minded stubbornness and people don't see the whole picture, just a snapshot in my day.

I'm going to email that to everybody on my list.

My DSis has just undergone chemo. At the recommendation of her doctor and for the convenience of being able to fit in all her medical appointments she was signed off sick from her job in an office.

At the same time, she has been able to carry on being a fitness instructor through her treatment.

She has had to cut back on the sessions she runs and has to pace herself to be able to do them (e.g. rest lots on the days before and after her class) and has to miss the classes on the week after treatment, but otherwise they have helped her keep her fitness levels up.

It is probably the reason her treatment has done so well. Her consultant told her she'd probably/definitely not be able to carry on with her classes and she was bloody minded enough to prove them wrong.

Unfortunately she's now had to stop as has had her op and hasn't as much mobility now.

Of course some conditions are fluctuating. But some that are highlighted in the papers as fraud and prosecuted, are not.

And SOME people with fluctuating conditions can and do work. I have holes in my lungs and work, I will be off sick more e.g. with a bad cold as these effect me really badly, but I do work. I just have sick days when perhaps others could struggle in.

Employers are often worried as hell about employing people with fluctuating conditions as it can seem more risky than someone with a stable condition. So although it is important to educate people about fluctuating conditions I also fear that discussions like this just reinforce people's prejudices about people with disabilities or chronic conditions not being able to work.

Thank you OP for posting this - a fantastic statement. Sometimes you get so overwhelmed by all the hate on the internet and you think everyone else feels that others are scum. Lovely to see so many supporting this. Has cheered me right up :)

It's a good attitude to have and important to consider.

Occasionally though, I think it's also important to remember that people can lack empathy and understanding because they themselves are struggling but in a different way so the understanding is hard.

I have a type of bipolar depression, anorexia, possible BPD and mild OCD. My way of dealing with these things is to be insanely busy and fake cheerful all of the time. I work a 70+ hour week and do loads of stuff outside work for both the children and myself because I feel like I have to and I fall apart if I stop - eg, I find school holidays really hard and have to structure them into busy-ness.

Consequently I find it really hard to understand people with mental health problems who are unable to work. I have to fight myself not to feel scornful and think that they should keep smiling and get on with life. I know that's unreasonable of me but I think it's a result of my own problems that I find it difficult not to think like that.

Does that make any sense?

Makes sense to me, Although I'm the opposite I can see why you would think that when you are struggling. On my bad days I find it impossible to get out of bed or even speak sometimes and conveying any kind of emotion can be really tough.

Yet when I'm manic I'm like a whirlwind. Cleaning the house from top to bottom, Cooking complicated meals from scratch, Baking up a storm and shopping like a Hilton sister. But it's not real and everytime I get these kinds of highs I always know in the back of my mind that a low is coming.

It can be really frightening.