Hello to all my Fybro Friends and hope you had a great bank holiday.
I went to a Summer Show on Monday, the first in years. I used a mobility scooter so that I was not in too much pain. For the first time I was out with my hubby and friends and I was not suffering with chronic lower back pain. It was great,
One problem I found that I became "invisible", yes to the able bodied I seemed to vanish. 2 young girls walked right in front of me whilst I was watching a lady demonstrating her rug making techniques. It was not as though I left a large gap between me and the lady sitting down. I felt as though I was being pushed aside. It was as though they did not even see me sitting there. I can not believe how rude people are. Just one stall holder came over to me and asked if I wanted assistance, such a nice man. People did not give way to me, they seem to walk into me, I had to stop and start so many time, that I ran my battery completely flat and my friend pushed it back to our car. What a day.
I have watched when out shopping too, able bodied people have no patience with disabled people. It is as though you become unimportant, a second class citizen and INVISIBLE . We don't use mobility aids for no reason. If you look all right and you sport a bit of a tan, there is nothing wrong with you. If you are trying to live a relatively normal life, you are not ill AND why is it every able bodied person is an expert on your help.
Frustration is the norm I think for all of us Fybro Sufferers. Take care and see if you are "Invisible" next time you are out.
Bye for now
Deelightful.
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deelightful
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18 Replies
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Yes I find I am permanently "invisible" and it's really frustrating. I find I take ages these days fiddling around in my handbag for my purse at checkouts and till points. People get so impatient behind me trying to find the right money, coins are a nightmare. The main problem I find is that we look perfectly normal, so consequently people think we are.
I don't use a walking stick or anything when hubby and I go out, so for all intents and purposes I am normal. I hobble a bit, lose my balance a bit when it feels like the pavement is sloping (even though it isn't). Sometimes revolving doors are a nightmare for me as my visual perspective is erratic and it feels as though the doors are heading straight for me!
I also am terrified of escalators - I never gave these a second though before Fibro, now they are steel monsters to me. I always try to take the lift but sometimes it's not possible so I have to hand on to hubby for dear life, I feel like I am taking my life in my hands. I can't believe how much Fibro has disrupted my life even down to an escalator!
People are generally very intolerant and ignorant regarding Fibromyalgia, I have given up trying to explain because on the few occasions I have tried to, I've been met with a curt response, it's not worth it. I don't tend to go out on my own these days, I feel safer going out with my husband by my side. If I am feeling well enough I will go for a short walk on my own, but that's very rare these days.
I am so glad I didn't have a crystal ball before I was diagnosed with Fibro, I would have hated to have seen how much this condition affects all aspects of a person's life. Having said that, I am naturally very positive and I absolutely refuse to be beaten by this illness and all the obstacles it brings! It won't get the better of me! No Siree!
I just had to reply to this! I read this & it was like myself talking... SO SO similar. Yes the "invisibility" is a real problem. Despite using a stick, mainly for support & balance I've been shoved & trod on, battered with bags & generally tutted at for being in the way. Like you, it's put me off going out.
When I go on a mobility scooter I've not really had this problem at all - perhaps I just enjoy getting out and about too much to notice; but then I always have been the sort to talk to total strangers lol
I have experienced this particularly in ASda when in a disabled scooter. They walk infront, barge through and are thoroughly rude. I hope they never find themselves in need of a helping hand or a scooter for shopping. You feel at the wrong height for every thing and the peeps do not assist you it is awful ! Still I dont go there any more I go to a nice quiet Tescoes where life can be led normally with manners ad happy people x gins
if i use my stick i get stared at in public and people tut at how long i take to move around.if my family friends see me with make up on they say you look okay today?if i dont wear any make up i get god you look rough today and illl?
but thats coz your not wearing any make up isnt it?
i dont put any on when i go to my g.p incase he thinks im putting it on.wot for a measly 60.00 a week and all this stress not worth it.
so do get where your coming from.i always move out of way for people in scooters etc but some t.b.h just ignore me and never say thanks.
i feel like screaming saying im disabled too except you cant see it.
This seems to be the norm when u in a scooter to become invisible last week we went to Warner bros studio waford to the harry potter set it was amazing .but harry definatelylent me his cloak of invisibility. Definitely to the able bodied lol x
I find it's even worse when pushing my husbands manual wheelchair. Especially in town. For pushing to be easyish you need to gain a bit of momentum. As soon as you do people step out in front of you. Or just stop, suddenly. Or dawdle along taking up the entire pavement whilst texting. It's a nightmare.....and don't get me started
Yes i totally agree with what you and others are saying.
I had a similar experience the other day in my local Asda store. In this store a member of staff hold a sign which tells you where there is a space.
I had my walker and was about to go into a particular checkout when this bloody woman ran straight in front of me almost knocking me over in doing so, and grinned at the fact she had got there first, well i asked her if she thought herself as being clever and the member of staff didn't say a thing, so yes we are invisible and no-one cares about us and in fact i think the great British public and Cameron need to be educated on how Fibromyalgia, and all other invisible illnesses affect us, and this sort of treatment really messes up our whole day.
i used a wheelchair when shopping in b,q never used one before will not again. i found myself apologising, asking people to move. when on sticks its just as bad. never mind at least i shopped for the first time with no pain it was wonderfull but sooo frustrating
I use a scooter but my carer has to get it out of the car for me as I cannot lift it out. So I am totally dependent on him to take me out. Unable to drive for over a year since my shoulders, arms and hands are so bad that driving a manual is virtually impossible. Also use a a walking stick that turns into a stool which is also a god send. People always stopping me in street to ask where I got it. Local chemist. One person said that I was not really disabled because I used a mobillity scooter . I thought my carer was gonna kill him. He told him that he had absolutely no idea what I went through. I ended up in tears. However, although there are a lot of thoughtless people out there, there are also a lot of really nice and helpful people who often try to help me, including when I get really upset. Does anyone else keep bursting into tears or is it just me?
No you are not alone, I have been come an emotional wreck, cry at anything. The worst thing I cry at any emotional film, even the News. When we are with friends it is so embarrassing, I start and can't control it. Thanks for you comments too.
I'd cry at anything until my 2nd husband walked out - I had one big bawl and then haven't cried more than half a dozen tears at a time since then; I suspect I have used up my lifetime quota in the 6 months before he left.
Strange how the tear ducts overflow or dry up isn't it? Sometimes I know a good cry would help but it just won't come !
invisible? oh yes. at times all of the above. I now tend to say excuse me very loudly, often people genuinely are unaware, one of two who deliberately and ignore me get gently bumped and soon move! I generally say "sorry, it just doesn't stop when I let go" most people are pleasant. If I'm feeling down paranoia sets in and it upsets me.
We have a right to be out and ignorant people wont stop me. I can be polite but firm e.g "I'm sure you didn't see me otherwise you'd never have stood in front of me." to a louder "I'm sorry you mustn't have heard me, I said..." and an even politer "thanks" to follow. It takes a bit of courage but I go into bravado mode. judge your battles and never put yourself in danger
Everyone should spend at least one whole day in a wheelchair - I wish they would teach this sort of awareness in schools - children who are made aware of the need to be wheelchair aware or even disabled aware would make for a better society one day. xx
What a good idea, I might just mention that when I go to my daughter's 6th form getting to know you parents evening next month. It would be a useful thing for Y12 to do.
I used to say this years ago - way before a wheelchair was thought of for me! I also wish wholeheartedly that they would teach children to meditate & become self-sustained in this way. A calmer, stronger holistic approach to teaching, well society in general, is desperately needed... At least that's what I think!
I have been outraged so many times during the years I spent pushing my mother around in a wheelchair. There were a few people who were generally considerate but they were in a definite minority. People would step over her legs to actually stand in front of her or push past in doorways etc., letting the door go in her face. In the 20 years I pushed her around she had doors slammed on her, was savaged & clouted around the head by people's shopping bags &, worse, wire baskets, was stood on, sat on (oh yes someone didn't quite make the stepping over action!), talked over & not at (there was nothing wrong with her mentally), ignored... and somehow worse spoken to like she was 3. She had fibro (like me) plus other problems (also like me!!) but she was a bright & thoughtful person and certainly did not need for me to interpret her wishes to a shop assistant or take her change. I even experienced a time when way before all the curbs were dipped for wheelchair access - I do recognise that these run ins are not always you want them now but in times gone past they just didn't exist - when I was stuck in the road trying desperately to get my mother in her wheelchair up a rather high curb. I had tried forwards without success so reversed to go backwards in an effort make things work. A car had to slow down (oh how terrible) but instead of just taking a second to appreciate the fact that he didn't NEED a wheelchair & to be thankful for that, the driver just revved his engine and blasted us with a huge long parp on his horn accompanied by a waving of a fist out of his window & some expletive or another..??? Of course that made ALL the difference to my ability to get my mother up the curb (she wasn't a light weight!!) and helped everyone enormously... not!!!
As you can see it is a subject close to my heart!!! ;-).
When i was doing the Open University Psychology course (stopped it after 4 years coz fibro got too bad). We did an experiment on how people are treated in wheelchairs. So someone who didnt need a wheelchair went around the University Campsite for a few days in a wheelchair. Was very enlightening. Exactly as CelticMoon said with some very lovely people as well, but genuinely not good. How on earth do they think that the ParaOlympics are going to change how people perceive disabled people. Much as I live in hope, I am very sceptic.
What irritates the hell out of me is that ATOS are sponsoring the ParaOlympics. Huh, they are ones doing the assessments for DLA and new PIP. So are they taking the piss or what. Takig with one hand and giving with the other, or is it just a politial stunt to try to look good in the eyes of the general public.
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