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?

@ellendegeneres (love the show btw ) it’s managed with medications like steroids and immunosuppressants mostly, I have had 2 surgeries to remove small pieces of diseased bowel and I’m looking at a third possibly at the moment due to this particular flare. @coffeebean76, you’re so right about needing more open discussion and help from employers!
@faithinfinity....that’s interesting how you reword that. I’ll have to think on if that is a way of adjusting my brain!! Thank you. I have 2 children with ASD and we did the same as you on a flight a few years back and it really helped them. Weirdly I’m quite happy to fight for and accept help on my children’s behalf. That’s much easier than for myself!

@tinklylittlelights, yeah I understand that. Going out with crutches the first time was very nerve wracking. I made the decision to paint and customise my crutches which helped a bit, I figured if people were gonna stare they could have something to stare at

Legally a disability is classed as a long term physical or mental impairment, so you would be covered by disability legislation.

I know your self concept is something completely different, accepting I have an (invisible) disability makes it easier for me to not be harsh on myself for the things I can't do and ask for accommodations to make life easier for me.

I still don't see myself as a disabled person though.

I am disabled as I meet the legal definition but it creeps up on you over time as your health deteriorates and I found it took me a long time before I felt comfortable using the word. Needing an Access to Work assessment helped a bit oddly! I still joke about my "disability" though. It still feels a bit odd to use it even though my life is impacted in lots of ways.

It took me a while to tick that "disability" box on the back to work forms. I think what pushed me to do that is the amount of sickness I was needing to take and I knew I had to start ticking it as I needed the Equalties Act protection. I therefore sat down and thought about it and realised the definition clearly applied to me.

@OwlBeThere, don't know really. I suppose because I still manage to work full time as a nurse on a busy ward and see people far worse off than me. I can't change the diagnosis so no point in wallowing in it. Just have to get on with it.

Another "pro" for accepting you are "disabled is financial. I have Rheumatoid Arthritis and have had to buy various bits of equipment such as walking aids, and also special cutlery because at times I can't use a normal knife & fork. It soon adds up! As a disabled person you are able to be VAT exempt for these things, which is a help, if only a small one.

For Crohn's I think you absolutely should be able to use the disabled loo. No question.
I have MS and appear able bodied. I work almost full time and I don't want to be disabled. The MS organisations do say you should declare yourself as disabled to ensure you are protected by legislation. I do struggle walking any distance without my foot brace. I don't qualify for a blue badge but recently when I was out with the dc I did ask about discretionary disabled parking and they were lovely about it. Made a big difference to how much I could do knowing I didn't have a long walk on rough ground back to the car.

I'm disabled. I have several conditions which affect all areas of potential function. It took me a long time to accept this. But accepting it and applying for a blue badge etc, has freed me. I can now legitimately ask for and receive help when I need it. And I have access to shops and places so now even when I was a single parent and was in bed a lot, I could do the bare minimum by popping in the car and being right by where I had to be etc. I hate it as a label and am still ashamed. But that's because of the stigma I grew up with.

Toddler I understand what you mean. It's not that bad compared to so many illnesses. However if you have a flare or it progresses you may need the down time or adaptations so it's worth getting it on record now to show what you can do when you're 'well' versus when you aren't iyswim. Look after your livelihood.

The crohns alone would class you as disabled.

I have a disabling condition which I mostly have under control, so don't generally class myself as disabled. There are days and situations when I'm bloody well not going to argue the toss about it, though.

But while we're on loos, I like that M&S often have cubicles with doors that open outwards, avoiding the painful limbo dance, easy flush mechanism, rather than something my fingers made of blancmange can't press, and bars on the cubicle walls, so i can sit down without falling over. I think a lot of people would appreciate this in more general use loos.

I have a chronic long term illness that impacts negatively on my day to day life and caused numerous hospital admissions but in no way do i consider myself disabled. I take my medication, I pace myself, I stop when I'm really struggling until I can carry on and if I can't carry on that day/week I consider myself unwell not disabled.
I'm raising my grandson who has brain damage (Feotal Alcohol Syndrome) and I absolutely consider his condition to be a disability. His disability impacts on his ability to live a normal life every second of every day, he requires full time 1 2 1 support to enable him to attend school and he will most likely never live independently.

I have Episodic Ataxia type 2. My youngest son has Autism, learning disabilities and Ulcerative Colitis . Neither of us.on good days.. 'look ' disabled.
On bad days I can't walk unaided, and he's in the loo 20 x a day and he will never live independently.
Both of my daughters have Ehlers Danlos Syndrome. Their joints dislocate at the drop of a hat, one has severe heart issues and they are both on a shed load of medications just to function . We all hold down jobs.
But do we all have disabilities? Yes. I have a radar key, as does DS2. I used to have a blue badge but didn't reapply so mine has run out . DS2 lost his when PIP changed the rules even though he's on high rate mobility as he can't go anywhere independently.

We crack on with it. But some things..yes we accept our disabilities. He has a CEA card for the cinema, and I'm his carer at theatres (he is obsessed with musicals). I accept assistance when my ataxia is bad

Disability is a flexible issue ...some days i'm disabled, and some, I'm not!

I got a shock recently when I heard my DH tell a member of hotel staff on holiday "my wife is disabled". It upset me that DH views me in that light, but I guess he is just telling the truth.

At 59, after leading a very active life I have developed Osteoarthritis in my hips. It is severe in one hip, mild in the other, but to be fair my mobility is greatly reduced as I cannot walk very far.

I still manage to work and contribute very well to our household, so I resent DH classing me as disabled.

I called myself disabled today for the first time. It made it easier for the person I was talking to understand.
I had the call the children’s school and explain that ‘because of my disability they would not be able to attend today’
I wasn’t trying for the sympathy card but it made them think harder about what they could do to help rather than just complaining about attendance.

@AlunWynsKnee work have been fantastic about it. No issues when I've had a relapse or needed time off. They are really good if they can see I'm struggling. I've had the most effective treatment available.(at enormous cost!!) so hopefully it will stay under control for a good few years. I also think that mental attitude is huge important as well.

My parents have recently moved house and my DF has finally retired. They are in their late 70's and have asked me to arrange a disabled parking badge.

I feel uncomfortable about this because I dont think either of them are disabled, apart from being a bit slower and stiffer than they were 10 years ago.

It's partly selfish of me because I think they are unnecessarily 'aging' themselves. But the real argument, I suppose, is that they might occupy a space for someone who has much more need of it.

Hmm. I don't think they are going to be very happy...but reading this thread makes me feel that the right thing to do is to dissuade them.

I agree mental attitude is vital. I have ticked the box on my HR record but 90% of the people I work with have no idea I've ticked that box. I'm the same person I've always been. My manager knows and they're great but if my management chain was to differ to someone I felt less comfortable with, I want the history of performing in spite of the MS on record.

It took me a long time to accept that I have a disability, as DS1 & DS2 have disabilities, DS1 is a full time wheelchair user with quad cerebral palsy. I have chronic neuropathic pain, fatigue and everything else that goes with it, as well as a knackered back from too many years of being a carer.
I try to live as much a "normal" life as possible but sometimes you just can't.
@OwlBeThere in regards to your OP, just with the crohn's on it's own entitles you to use the disabled toilet. So YANBU at all.

@DonutsLikeFannys psst your ignorance is showing. A bit embarrassing, so you might want to check that, hun.

@Donutslikefannys, do fuck off. I worked a full time job in the NHS, then taught a minimum of 2 dance classes every week day, trained a girls football team to the top of their league 2 years running at the weekends all with Crohn’s disease, then one day I woke up and thought I had the flu. And I’ve felt like I have the flu since. That was 3 years ago. my dance school that I built from nothing to 70 pupils is now run by someone else as is my football team. It breaks my heart. And people like you make that heartbreak all the more painful. So if you don’t have anything constructive to say, just fuck off,

@totalfusion, I have two children with ASD One of whom is unlikely to ever live independently and of course I realise that disability is a spectrum. That’s sort of my point. There are people who very clearly not disabled, and there are people who very clearly are severely disabled. But there are also people in the middle and at what point on that scale does disability begin?
We don’t have a ‘register’ of disability in this country so it’s not a clear cut thing.
@professorofperspective, I suspect your parents will be turned down for a blue badge anyway, it can be quite a difficult thing to get depending on your LA.

OP I also have CD, I get you. I’ve had numerous surgeries and now have a permanent ileostomy.

I consider myself disabled, but only because I receive PIP for it. If I didn’t get that, I wouldn’t consider myself disabled. Just the way I work it

I'm also legally disabled, going by the criteria that without my medication I wouldn't survive very long. But on medication I'm essentially fine, maybe requiring an extra break at work but little else. The job applications that guarantee an interview if you "consider yourself disabled" always cause me a lot of moral deliberation!