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?

Yes i would class you as disabled.
I have crippling OCD as well as bladder over sensitivity and IBS and consider myself disabled as i am impacted daily and can't live a normal/typical life.

YANBU to cal yourself disabled. Don't have guilt! I have Aspergers and struggle to call myself disabled although legally I am. It is a very different kind of situation than you and when I've had more physical health problems (Like when I burst a disc in my back and I couldn't walk) I would happily have taken more help if available!

Yes me op. I too have fibromyalgia, CFS, anxiety, chronic insomnia, OCD and am currently being assessed for ADD.
I'm sick of all of the labels and am sick and tired of being sick and tired ( you will totally get that I'm sure )

A few weeks ago I was at Asda and was simply exhausted. My insomnia has worsened this year to the point that I'm averaging waking up between 1/2/3am every single night. Anyway, I digress, I saw a till at the end which had a disabled sign on and used it. I didn't know whether or not i would be questioned, after all, "you look so well" etc etc...

I've been thinking the same recently.
At what point does this become a disability? How old are you op if you don't mind me asking? I'm 41.

thanks, I think I need to have someone else say it to almost validate me. Which is daft. It would almost be better if there was a doctor who said ‘ok at this point we would consider this disabled’. You know? Rather than it being as ambiguous as it is in this country.

Been there, done that.

My life got so much better when I stopped thinking of myself as a well person who kept not being able to do things, and started thinking of myself as a disabled person who could do quite a lot.

I embraced the stick, the wheelchair, the disabled person's railcard, assisted travel, the lot. And, suddenly, I got some fragments of my life back and could do more things that I used to do. In smaller amounts, and requiring military planning, but better than continually having to cancel because I wasn't well enough on the day.

So yes, you're disabled. You have a chronic health condition that impacts your life and affects your ability to do things. You're the person the concert wheelchair and disabled entrance exist for!

@zoflora I’m 36, and I TOTALLY get the sick and tired thing.
Another issue for me is people’s attitudes to things like fibro and CFS. I know for a fact there are people around me who think it’s not real and an excuse to be lazy. And that bothers and hurts me a lot.

Er no as I do identify as disabled myself, I just got to a point where my mobility worsened to such a point that I had to ‘embrace’ my disabled status as such.
I think it’s a very personal decision and one you can only really come to yourself. If adjustments like wheelchair assistance etc as you’ve described take the struggle away and enhance your enjoyment of an experience then that’s great and it puts you on a level playing field, as is the wish of what was the Disability Discrimination Act. The same legislation described disability as something that ‘has a long term and adverse effect on activities of daily living’. From what you have described in your post it sounds like that might be your case.

I have chronic fatigue and PTSD. I often feel so exhausted I can’t even go to the local shop, and I have to sleep every day (during the day) without fail. I often have to turn things down as I know I won’t have the energy. My sleep is terrible as I’m often too scared to sleep. I also have Aspergers.

Applied for PIP and got zero points. Guess I’m not disabled then 🤷‍♀️

Ahh @perkingfaintly!! Your post has just so eloquently summed up everything I’ve been feeling. thank you so much. You’ve no idea how much that’s helped.

Yes OP if it helps look at the equalities act definition You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

@islands81, you need to appeal that my lovely!

@merrymumoftwo thank you I will definitely do that.

@OwlBeThere - I was so ill when they turned me down I literally didn’t have the energy. When getting dressed is more than you can handle, the thought of engaging with those twatbadgers is a no go.

I have MS and even when I am
On crutches and can barely stand up I still wouldn't class my self as disabled.

I have similar conditions and consider myself to be disabled, yes

I would say yes. But it is more about how you view yourself.

You absolutely should use an accessible loo if you are physically unable to use any other.

Toddlerteaplease, I get that for some people it's important not to use the word.

As long as it doesn't stop people using the crutches and other aids and assistance, then fair does.

For me, using the word helped me adjust to the fact my expectations and prep had to be so different from before I was ill.

I have ASD and I think of myself as ‘having a disability’ but not as disabled..does that make sense? I am perhaps not as able as some but wouldn’t expect priority treatment over people with other issues. I think if some days you’re reliant on crutches and in severe pain, yes you’re disabled.

Take the help you need. For example. You might be entitled to a radar key, especially with the crohn’s as well as physical difficulties, to make life easier physically and more pleasant if you are having a flare up to have a private cubicle.

I’ll give you an example of me finally accepting help (I’ve only been diagnosed 3 years). We went on our first transatlantic flight recently. I’d heard the airport did a lanyard for those with invisible disabilities so we accessed that service. We got to check in the disabled lane (no queue), went through the fast track security and passport control, boarded the plane first, had the cabin crew kept an eye on us. It was brilliant. I’m a nervous flyer, queuing exacerbates my anxiety. This extra help reduce my anxiety levels and made it a much more enjoyable experience. I said to DH I felt weird about accessing the service and he said Well we have to make adjustments every day to support you, might as well take advantage of the rare thing that actually helps!. He was so right.

for you. I’ve had chronic but treatable pain. Currently waiting on a diagnosis for another issue but I know it sucks. It must be tough when people are disbelieving! Definitely take whatever help you can get and if recognising yourself as disabled gets you that help, go for it.

I say definitely yes, for the fibromyalgia alone. Crohns separately is a disability of its own.

I’ve many spinal issues, fibromyalgia too. I am disabled. It’s not something I brag about but you can’t help but see that of me because I use aids to mobilise.

Don’t be feeling ashamed to see yourself as disabled. It’s a mindset thing and took a long time for me to come to terms with, but I now accept it as part of me and appreciate other aspects of my life more due to the limitations I suffer. Does that make sense?

I suffer ibs, that’s awful enough, you poor love with crohns. How is it managed/treated?

for you; you’re stronger than you know

All power to your elbow, OwlBeThere! Hope taking up the help means you can keep on going to concerts.

@zoflora I used to work on the checkouts at Asda - the checkouts marked as disabled are just to indicate that the lane is slightly wider so is wheelchair/mobility scooter friendly. Any one can use them, but they do tend to be quieter.

We need to work on the stigma around disability to make people feel they can use accessible loos and other facilities without question.

Much more work needs to be done by employers to acknowledge the additional support that we should provide to people with disabilities.

I’m glad I work in the Tech industry where we are prioritising this however we are currently not doing enough and are well aware of that.

@Toddlerteaplease could you expand on why you feel like that? You don’t have to of course, I’m just interested if your thought processes are like mine.

@yabbers I have used accessible loos for a long time. because of my crohns waiting isn’t an option so I’m quite happy to go in whatever toilet is closest. But even then I never would have classes myself as disabled with the crohns as I suppose I’ve had it so long (since I was 4) I’ve never thought about it. When i was physically ok then the crohns on its own didn’t stop me doing much. I coached kids football and had a dance school as well as a FT job as a speech therapist.
Now my life is very different.

I found embracing all the disability aids and equipment made me feel better physically but worse mentally. Disability takes a bit of coming to terms with, especially when a lot of your identity has revolved around not letting it beat you.

But I missed out on so many things because I was too exhausted and in pain to walk or stand for a long time. I’m able to participate and enjoy things more from a wheelchair.

Tinkly, I had to bring my thinking round to "If I'm not able to go to the family birthday party, then it has beaten me. If I use the wheelchair and thus can go to the family birthday party, then it hasn't beaten me. Because the party is what matters to me."