Upset

[clare86]

I went out for two hours this afternoon, to a local carnival parade, in my new wheelchair. This is the second proper trip out and I have never felt so embarrassed in my life. People were constantly staring at me in the wheelchair and because I have to use a CPAP breathing machine also. I now don't want to be seen in public. I am so upset tonight.

[Suzie40]

I wonder why they are staring? They could be thinking 'Oh look at that person in that wheelchair. Good on them for making the effort to get out to a busy carnival. That can't have been easy. I wonder why they're using a breathing machine? I hope they're ok'

[gardengnome in reply to Suzie40]

very sound, i think we all make the classic mistake of "mind-reading" and assuming the worst of people. i know i do,

[clare86 in reply to gardengnome]

I am more aware of peoples body language since this is a recent thing

[Hidden in reply to Suzie40]

Good answer Lucy. Or they might have been thinking you looked upset and wondering whether they should offer to help you? People are often unsure how to react to a disability so hard as it is it is up to you to reassure them with a smile or even a wave if you could manage that. If you look happy as though you are enjoying yourself (even if you aren't) then I think people would stare less. Not easy to do. Just tell yourself that you are entitled to go out and nothing and no one is going to stop you.

Were you on your own? Can you try taking someone with you until you become more confident? Please don't stay in because of that. You will have to get used to it I'm afraid and learn how to deal with it. Don't give up. xx

[clare86 in reply to Hidden]

Thanks for advice. My mum was with me. I was putting on a brave face and smiling. It didn't help when someone i know came up and said omg what's happened to you, you poir thing being stuck in a chair and with machine. Its early days for getting out, i am very self conscious and nervous.

[clare86 in reply to Suzie40]

Thank you Lucy. I have an extremely rare autoimmune disease that has caused my lungs to collapse, hence the breathing machine. The people of Marple used to know me as the fit and energetic lady, but not now.

[gardengnome]

oh clare86. i can imagine how embarrassing it felt. they should have been looking at the parade instead. People are drawn to wander about anything that is different, and normally people have the good manners not to actually stare, guess people do loose their inhibitions a bit when in a crowd though. I know it might take a little time to get over the day, but the more you get about, the less people will stare, the novelty value does wear off. Oh dear this sounds a bit flippant i know, .people do act worse in crowds in all ways... I guess you have used a chair for a while, and it has happened before, Rudeness is an obstacle just like pot-holes and kerbs, except somehow it hurts more than bouncing off a gigantic kerb. I am cross on your behalf that those people ruined part of what should have been a good day for you... i am figuratively throwing tomatoes at them as i type. xxxx A

[clare86 in reply to gardengnome]

Thank you for your kind response. The chair is new to me, and hopefully not permanent. Kerbs and potholes are a big problem around here, need an off road buggy, lol. Tomatoes made me laugh, thank you

[Photogeek]

Clare well done on going out. How do you know why people were staring? Maybe they thought

That you were staring at them, what the heck does it matter. You cannot be sure that

They were thinking anything negative about you, maybe you area bit self conscious . That

Will pass the more you go out and enjoy your life's

People stare all the time so what? Ignore them otherwise you will become a prisoner

In your home. You are far too young fir that. Put your glad rags on and go out, smile,

If people stare, give them a wave. Enjoy the lovely sunshine.

Hannah

[clare86 in reply to Photogeek]

Hi Hannah, people weren't being discreet, they actually looked ne in the face and stared and stared at my machine. I was so embarrassed.

[Photogeek]

Hi Clare that's awful, just ignore those rude people. Try and feel sorry that they are

So rude and silly that they stare at anything new.

Don't let it get to you, maybe try and go out again, be prepared for a few stares,then

You will get used to it.

Hannah x

[clare86 in reply to Photogeek]

Thanks Hannah x

[oxytic in reply to clare86]

Clare 86.People are so curious and are unaware of there body language they stare as their brain takes it all in ...if there were a midget passing they would stare I would stare at a pixy or a goblin ... anything out of the norm ,even you would take an extra look at a dog with two legs and its back leg on wheels all this time no one bothered to look at you hmm .at last people are looking your special enjoy it love it and it will delight you .... try anyway bless you ...eric

[clare86 in reply to oxytic]

Thank You Eric for your kind words and encouragement x

[hamble99b]

smile at everyone who you meet, those that ignore it don't deserve one.

some people don't know how to behave around disabled people, some don't even know they are staring.

is it your own chair? my friend's sister has "pimped her ride" she's used stickers and ribbon to make it distinctive. I've got some on my crutches. they can be a great talking point

the more you go out in it, the less others will bother you. enjoy your new freedom!

I have a rare auto-immune disorder too, if you pm me, we can swap the names.

regards,

hamble.

[clare86 in reply to hamble99b]

Hi hamble96b, yes it is my own chair as nhs let me down and lost my referral and would have to wait 9 months to get out. I will PM you if find link x

[celtic27465]

Claire the way I deal with it is ask them if they want a picture it it usually works as when I first came out of hospital I got stared at but ignored it unless it became constant ! I used to wonder if people were been curious or just ignorant ! Please dont be put off by your experience and get out and about you will gain a lot from interacting with others ! I wish you well take care !

[clare86 in reply to celtic27465]

Thank you x