AIBU to call myself disabled?

[OwlBeThere]

This is a thought I’ve had for a while anyway and the thread about disabled toilets has spurred me to post and ask this.
At what point does an illness/condition/syndrome/issue become a disability?
I have fibromyalgia which means I have constant daily pain that fluctuates, on the worst days I’m unable to leave my bed other than to use the bathroom. This is probably about 30% of the time. It also causes extreme fatigue
I also have Crohn’s disease, I have avoided surgery thus far, but am in a run of flares at the moment and using the bathroom upward of 50 times a day.
So....does this make me disabled? I don’t think of myself as disabled but it’s also true that it impacts my life a great deal.
On my worst days where I’m using crutches to walk or can’t go out coz I’m too sore/tired/shitty then I feel it would be reasonable. At a concert recently for the first time I stopped trying to be a hero and used the disabled entry where I was given wheelchair rides to my seat and priority access to the train and it was AMAZING and made the experience so much better and less stressful than other times....but at the same time I felt guilty because I probably COULD have managed it without that stuff, but it would have been so much more painful and fatiguing.

Anyone else struggle with this issue?

Donut

Why would you even post that you ignorant fuckwit?

Do you actually believe that?
If so then I hope to god you are never cursed with this horrible incurable and debilitating illness.

I'm a shadow of my former self. Have lost friendships over my inability to lead a normal life and the pain it causes, literally and metaphorically is huge.
You know nothing. Nothing at all.

I wonder if you would have the guts to say that in real life to a fibro sufferer?
I'm guessing not.

Yes! I have chronic pain but some days I'm okayish, when I applied for my blue badge I was totally honest (they ask you how many times you could walk around a field) and said that some days I could do it for a hour or some days I wouldn't make it to the field! It's hard when I get queue jump at events too as no one seems to believe I need it and I get a look, it's hard but better for my health. If I didn't queue jump the standing waiting to get in would mean Sometimes I would need to go home from doing too much by the time we got to wherever we were going!

I have a long term health condition that had a major negative effect on my life for years. For ages I insisted that I wasn't disabled, but actually once I accepted that I was, and that that was okay, it helped. I decided that I should push for reasonable adjustments to enable me to do my job.

However, at the moment my condition is under control to the point where I am no longer disabled by it. I still have pain and have had to make adaptations to my life to keep it that way, but flare ups are now irregular enough that it feels like they're me being ill, rather than so frequent that I felt permanently disabled by them.

Accepting a disability label felt really hard, but a colleague who was disabled really helped me view it as empowering and that embracing it would help us to achieve more adaptations for the future and for others in the future, and to normalise the acceptance of disability in the workplace.

@nacreous that’s also a good point. So, essentially it’s not the condition you have, but the ‘disabling’ impact (or not) its having on your life that might tip the balance either way.
I also hadn’t really thought about accepting the disability label, ironically, being the key to feeling less disabled because you then get the adaptations you need.
Loads of food for thought. @Newmum19344567 yes I had quite a few of those looks when I walked up to the desk and then was taken away in a wheelchair at that gig. But without it, I wouldn’t have been able to go.

I have a rare autoimmune disease which struck me down out of nowhere 2 yrs ago. I went from being an active 50+ yr old , who went to gym, loved walking, traveling , as well as working full time and looking after 3 dcs ...to someone who could barely walk and spent more than 70% of my life in bed on long term drug treatment ( which includes chemotherapy ). My life is now nothing like I'd imagined

The the aim now is to keep me in remission , but the disease is very unpredictable and I can have a flare at any moment
I was off work for 7 months and have long been classed as having a disability so at least I have protection at work and adjustments have been made

Although to look at I appear fine there is little understanding of my illness and people can't comprehend why I can't do many things and I find I have to pace myself constantly to avoid pain and the constant brain fog
I applied for ( and fortunately got) a blue badge which allowed me to return to work (NHS) , as the staff car park was a long walk uphill and there's no way I could have walked more than 100m, and I'd have been finished before I'd even started work! It's been a godsend when I go into town and can park nearer shops ( although tbh I mostly shop online now as I get exhausted too quickly)
I can now only work 20hrs / week and feel absolutely washed out by midweek but need to work , otherwise I would lose contact with the outside world

You have conditions that limit your daily life so if you choose to consider yourself disabled it seems reasonable to me.

I did not read all the replies. I think it is a very personal thing. For some it is empowering to see themselves as disabled for some the opposite is the case.
Dh has ptsd and is short of hearing. He saw himself as disabled for a while but he discovered that is more empowering for him to see himself not as disabled. Same is true for BIL who has impaired mobility... and for a while he felt like a young man in the body of an old man and he discovered it was good not to see himself as disabled.

But everybody is different.

toddlertea I have MS too. Like you, I am not disabled.

I have cfs, fibro and chronic pain. Ignore ignorant people like Donut. I’ve reported the post as disablist. More and more cfs and fibro are being understood to be autoimmune diseases in main stream medicine although I expect it many years before it filters down to gps let alone the general public. The reason this is clouded is because some people love the attention and pretend to be ill. I’ve read toe curling posts on other sites by competitive “spoonies” for example.

I also think there are underlying imbalances and causes in the body for these illnesses not yet discovered. Interestingly since I had a genuine medical condition needing major surgery and a second big surgery I’ve been treated rather differently by some people around, who couldn’t get their head around me being just ill. I hope I will actually improve as my body was poisoning itself. I was very very ill before. Yet to see improvement. Too soon after surgery 2.

Mumsnetters actually told me a few years ago to class myself as disabled. I finally got a blue badge after a mum local to me got one and encouraged me to do the same. Her mobility is far better than mine. Yet to apply for PIP.

@ProfessorofPerspective
Please tell your parents not to apply for a badge. It doesn’t sound like they need one. The criteria for illegibility is being able to walk less than 200 metres. Assessment is by an occupational therapist and takes over half an hour. They will be asked a bunch of very targeted mobility questions and their walking will be observed. It will be a massive waste of the OT’s time and embarrassing for your parents. A BB isn’t a rite of passage for an older person. If they did pretend and get one they’d be taking a space from someone like me, who genuinely needs one to do essential things like go to the chemist to get my pain killers etc.

Thanks mummy, I've been feeling uncomfortable about the idea anyway!

Professor - I think the blue badge assessment is done differently by different local authorities, with mine it is just forms that you send in, quite a few pages asking questions for detailed info on how your mobility is effected and asking for details of your Dr.

I see many people in their 70's to 80's who use the blue badge spaces at the shops, the ones who look quite spritely and appear to have better mobility than me are quite often the same people who glare at me and shake their heads about someone my age using a disabled parking space. I think for some people unless they see you in a wheelchair or you're elderly, they can't comprehend why you're using a blue badge. I've had some really upsetting incidents, an elderly gent got quite aggressive with me last year, he was parked next to me in the disabled bay and even though my blue badge was clearly on display, he was glaring at me and shaking his head. Then he knocked on my window and and asked me if I should be using the blue badge and was it really mine. When I showed him my pic on the back he started saying well a lot of badges are fake ones people are buying, then I got a bit upset and he started to back down, told me he had to check just in case!

@Bluesheep8 long may it continue for you!

I have rheumatoid arthritis and now do consider myself disabled as it does have a major impact on my life and abilities. Some days I can barely move, I have joint damage from having it so long before diagnosis and always have pain and fatigue even on medication. But even when I am hobbling i still feel awkward using accessible toilets (as I need the higher seat) and I have had comments ‘those are for wheelchair users’ so I think there is still a certain perception around disabilities

I struggle with this. I have Addison’s disease, low immune system requiring daily antibiotics, severe asthma, anaemia and hypothyroidism (the anaemia and hypothyroidism is more severe than most people- and the Addison’s affects everything). I have good days and bad days but the bad days are really, really bad. I end up at the doctors most weeks needing stronger antibiotics for utis/ chest infections etc and visit the a and e department very couple of months having had some god awful flare up.

I keep most of this hidden from people. People really don’t understand hidden disabilities.

I receive Pip and the only person who knows is dh. I would never tell my friends as I know they would judge me for it, sad but true and these are people who have children with autism (as I do), another hidden disability.

I don’t like to consider myself disabled but I know I am really. I don’t have much of a life in a lot of ways.

Re the blue badge thing for the elderly parents - in our area there is no assessment. Just online forms.

Fairylea
That is dreadful there is no assessment. I totally understand why you don’t share everything with your friends. Me neither. My friends ask me if I had a good weekend. I spend most of it in bed. Week in. Week out. It’s soil destroying not to be able to say who I really am to people. Then it gives you the feeling of being a fraud.

soph7917
Absolutely Disgusting that you were confronted in this way. How frightening. I think it is so wrong that people get a badge when they don’t need one. If I am at the shops (ie supermarket/ small shopping centre it’s because I’m having a rare good day. I can understand people would be confused as to why I need a badge. I don’t use walking aids because carrying them is too fatiguing. They’d make me more ill. I grab onto walls, shop fronts etc when I’m bad as I shuffle to find somewhere to lie down. Sometimes I collapse on the floor.

Professor
Looks like my la is more diligent than some then.

Local authorities are making a mockery of the scheme. It’s discrimination to allow able bodied people a badge as a convenience. 😡

DP 'only' has Crohn's and he's disabled. Can get a disabled badge although we haven't applied as we have a baby so just use parent and baby spaces. He has a skeleton key to access disabled loos. He was one mark off recieving full PIP which is unheard of today, and he didn't take any letters from his specialists at all, and wasn't having a flare up, and works full time easy peasy (at the moment). So I would say yes you are disabled.

Not all disabilities are visually obvious, I'm pretty sure I've heard of fibromyalgia counting as a disability before. I don't know if I count as disabled or not - I'm very short and do technically have a form of dwarfism. I think I count in American terms but I don't think we have a set height that counts here. In fairness it mostly means I can't reach things so perhaps not a true disability. I can just about drive in certain cars without special adaptions.

I don’t know what donut said but I’m guessing it was something about fibro?

A lot of people are cynical about it, medical professionals included.

There was a AMA thread about it a while ago where people in medical care were saying that GPs and consultants diagnose it when there’s nothing wrong with someone but they keep insisting there is.

That’s why there’s skepticism, I think. There’s not a lot of definitive medical information around it. No tests etc.

As for your Crohns, I consider that disabling. My sister has it and it really can be debilitating at times.

But as PP said, it’s really down to how you view yourself.

I have a couple of chronic conditions. I don’t think of myself as disabled but there are times when I need to use disabled access toilets and I don’t feel any guilt about that!

@Ivanapea, donut said that if you go to the doctors and tell them symptoms you can get a diagnosis of fibro. Which may or may not be true. In my experience I had a whole raft of tests and it certainly wasn’t easy.
But I didn’t start this post to be basically accused of lying or to discuss whether people believe fibro to be real. I’ve had enough of that shit from ignorant people in real life. My symptoms and the pain and exhaustion are very real. I don’t care if people are skeptical, their skepticism doesn’t change my Life.

I have fibro along side another lifelong disability And the fibro disables me more than my other condition it exhausts me. Op you are fully entitled to say you are disabled.

I like the phrasing used by a PP, who said they "have a disability" rather than "are disabled".

It's good in a number of ways.

Eg I think it helps [general] you consider that you "have a disability" along one particular axis, eg need to be near a toilet, while not being disabled along other axes, so eg you don't need a ramp for access and you can work full time.

So it moves the consideration away from whether your whole daily life is disabled, to whether for this particular task you should embrace aids/assistance. This may fit well for the posters who say they use crutches but aren't disabled.

(Though you still have to recognise that some of the people/paperwork you deal with uses "are disabled" and "have a disability" interchangeably.)

Owl I figured it was that. It always seems to be contentious on here. Sorry you had it on your own thread.

@ivanapee I do get that it’s the kind of thing that, should you be so inclined, could be faked. But there is more and more research every day, studies shows people with fibro process pain differently in their brain and spine for instance. So people like donut can piss off.