Invisible Illness...today I got the f... - Fibromyalgia Acti...

Fibromyalgia Action UK

59,469 members66,515 posts

Invisible Illness...today I got the full meaning of it

Ozzygirl64 profile image
34 Replies

I have always heard it said that Fibro is classed as an invisible illness. Today I used my bus pass for the first time and I was glad to have it. I got my zero fare ticket and I went and sat down, not in the seats kept for the disabled etc, but the next one behind. Now do not get me wrong I have every respect for pensioners, after all I used to volunteer in a care home when I was younger and I was my grandads main carer after he had his strokes, but today they made me angry. Two pensioners got on behind me and as I sat down I could hear them, menieres yes, but they were not being very discreet, telling the driver how I had taken one of the front area seats. He said there was not much he could do about it. And then two more pensioners joined in with the first two. Saying about how those front seats were for the elderley and disabled. They carried on thus holding up everyone else. One man shouted from the front that I needed to move further back, when I heard the driver say 'even though it is none of your business, the passenger in question has a valid disability pass'. They looked at me in disgust as if to say that they could see nothing wrong. I was very upset. When I was getting off the driver apologised for the carry on and also apologised for telling them about my pass. I told him it was fine and loud enough for all to hear I said 'it is not your fault that people can be ignorant and they say ignorance is bliss'. With this he lowered the bus so I could get off easier and I could feel eyes burning into me. As I looked back sure enough, if looks could have killed I would have been dead on the floor. I was telling hubby about it because it upset me and as he said that it may be the first time and it won't be the last for it happening to me. But all my life I have shown pensioners the utmost respect and I will continue to do so. But now I feel I am going to have to explain myself each time I sit near to the front of the bus. And I do try to avoid the disabled seating if I am well enough to sit elsewhere. Sorry for my rant but just had to get it out otherwise I will dwell on it all night.

XXXXX :(

Written by
Ozzygirl64 profile image
Ozzygirl64
To view profiles and participate in discussions please or .
34 Replies
barnsleysar profile image
barnsleysar

Hiya hun, dont let them get you down, i dont have a pass but i always sit at the front (as i normally have my little girl in her pushchair). one day i was on the bus and the bus driver is also my next door neighbour. 2 pensioners got on and asked me to move so they could sit. when i said sorry i'm having a bad day they went to complain to my neighbour bus driver. their faces were a picture when he said " i will not ask my disabled neighbour to move, although she doesnt have her crutches today you shouldnt judge a book by its cover and you should show her more respect just because she is young doesnt mean she is fit!!" One of the pensioners tried to argue and he said to her "look love, the bus is empty, either find another seat or get off and wait for the next one, she's paid her fare and theres nothing i'm going to do about it" the other couple or passengers started clapping and the pensioners sat quietly 2 seats back from me!! it brightened up my day i tell you xxxxxx

Ozzygirl64 profile image
Ozzygirl64 in reply to barnsleysar

It won't stop me respecting them but I just wish they would try and look beyond what they see and tell themselves there could be a good reason for me sitting near the front. But I guess it is because they are a different generation, set in their ways etc. If you have high mobility DLA you could get a pass. I wish I had known this years ago lol xxxxx(at present I am easily upset)

carella profile image
carella in reply to Ozzygirl64

hi Ozzygirl, don't get mad, get tough and don't take any notice of them. I have a bus pass although i only get lower rate dla, as Manchester uk transport will issue them for mobility problems. however on the surface i look ok and this has caused me to recieve many 'looks' from drivers and passengers as if i'm swinging the lead. very annoying but i've learnt to ignore them. they don't know my health problems and frankly it's none of their business. keep your head up Ozzygirl!

gentle hugs xx

Oh you poor thing, you have every right to sit at the front. Trouble is with a lot of pensioners they think the world owes them something and that we should treat them with respect because of their age. Sadly there are a few out there who are so rude that they don't deserve respect. Luckily the majority are lovely.

Don't let them get you down.

Piggie hugs xxxxx

Ozzygirl64 profile image
Ozzygirl64 in reply to

I think I will always respect their age and the fact most of them will have played some part in the wars etc. I used to be friends with an old lady many years back and I did a lot for her and I visited often at times she did not need any help from me. Then I found out that she was reporting me to the council for all sorts of things I had not done and luckily I had a witness to back me up and who also knew how nasty this lady could be. When I confronted her she openly admitted it to me, said she was just having a bit of fun in her old age. So she asked what I was going to so about it. So I thought for a minute and said 'well firstly I am wondering what mug you will next to run around after you and secondly I will tell you that I will ALWAYS respect your age, but I will NEVER again respect you' and I left. Her hubby came a few times to tell me how sorry she was and it would never happen again, but the real reason he came was because all I had done in the past was now falling to him. So yes there really are some rude ones out there and I like to think that even as I get to old age I will still be polite and courteous no matter waht xxxxx

I have a bus pass, felt a bit of a fruad when I first used it, I have fibro and Im pleased to at least be able to get about as walking isnt much fun.

I got my bus pass 6yrs ago as I had to give up my driving lisense up through epilepsy, but I know what you mean, I have the utmost respect for older people and get on very well with the majority, but for some reason a few seem to think they are owed every priority without question.

lots of squidgy hugs

susanY x

Ozzygirl64 profile image
Ozzygirl64 in reply to

Yeah I felt like a fraud today using it and their attitude made me feel even worse. But bless the driver for sticking up for me especially as he had no wish to divulge my business. On reflection I am certain he used to be a cab driver for the company we use when a cab is needed for our daughter. She is not a good traveller as it is and she won't go on buses xxxxx

MrsOtter profile image
MrsOtter

I had a similar experience :/ the bus was full and there were nly the disabled swats left so i sat in one as there were no elderly people on the bus and I was litrally in tears everytime we went over a bump or round a corner because i was going through a flare up and a 30 year old women behind me started shouting at me because I was 18 and sat in the last seat... I was horrified. I didnt move though there were only school children stood up on the bus so I thought stuff her she feel the pain im in. :/ hopefully i will have a bus pass soon! Xxxxx

Ozzygirl64 profile image
Ozzygirl64 in reply to MrsOtter

How awful for you. What annoys me is even now if there are no seats left I will get up and let a pensioner etc sit down and suffer myself. It makes me feel as though we should have to justify our actions, spouting our private business around the bus just so we can prove we are entitled to sit there. But hey ho what else can we do. And never worry about spellings on this site we all make them and we never correct each other about it, that would just be childish if we started that. I knew a woman on another site and she literally went around the site pulling people up and correcting their mistakes. So silly. We can make all the errors we like here lol xxxxx

MrsOtter profile image
MrsOtter in reply to Ozzygirl64

He he didnt know if you would realise what i meant or not :) and yeah im done justifying myself to people just because im 18 doesnt mean im not disabled and in alot of pain every second of my life.. people can think what they like for me x

MrsOtter profile image
MrsOtter

Seats sorry not swats x

irisjoy profile image
irisjoy

i never thought i would be glad that i was born " a cripple " apparently i have a rolling gait but i am obviously disabled/ inconvenienced maybe i should be greatful. I have also found some elderly people extremely rude such as when my grandgirls hold a door open and they don't say thankyou i say loudly " they weren't taught any manners " sometimes they stop as if to say something but the truth hurts hey. Others will ask what i've done ? i just say its the way i am . Hugs xx

Ozzygirl64 profile image
Ozzygirl64 in reply to irisjoy

I think people in general, not just pensioners, think if they cannot see a problem then it aint there. I had one oldish(about 65) man hold open a door for a girl in a short skirt about 18 or so and as I went to walk through he let go of the door lol. I said loudly 'thankyou' and as he turned he said 'I was not holding the door for you' so I retaliated with 'I'm not surprised my mini skirt is in the laundry today' and I carried on upon my way xxxxx

irisjoy profile image
irisjoy in reply to Ozzygirl64

the thing that really annoys me is some people feel they have the right to judge others, people with heart conditions can have good and bad days. When i took my darling Mum in law on the bus ( she has Alzhiemers and vascular dem) there was 1 seat at the front in the disabled section so i sat her there and stood beside her, a young lady was sat in the other seat , others offered me their seats but i explained i needed to be by Mum after a few stops a man got off a couple of seats back but still she sat there , so i asked her to move back , politely of course , the other passengers were livid and one said i was going to tell her to move ! but then like you say we can't always tell, however the yound ladies 1st language wasn't english so maybe she didn't realise xx

Ljames72 profile image
Ljames72

I completely understand where you are coming from, I too have had bad experiences when it comes to travelling on buses, using disabled toilets (thanks for my radar key hehehe) had many complaints abt that too. And when I really bad, but have to go out and use a wheelchair to get about less pain on the legs, the looks people give you, like when I went to eldest daughters school last week about colleges, parents were tutting and moaning that I was getting in their way, and also called me a fire risk, yes me a fire risk as you can imagine this upset me a great deal because I feel concious enough as it is without ignorant people making it worse. The caretaker of the school was very helpful where lifts and getting to my car was concerned. The following day the head of my daughters year called her into his office and apologised for what happened to me and also phoned me and asked if there was any action I wanted to take, I just said politely no they cant help it if they are small minded, I may be less abled but I am better than that. Each day tho if he sees my daughter he asks after me. See some people do care.

Thing is to try and remember although our illness is invisible its not our fault and deserve to be treated with respect no matter what.

Sending hugs and keep chin up xx

Sthandra profile image
Sthandra

Hi all this one isn't bus related but it is age related I was in my wheelchair one Tuesday at the post office there used to be a disabled only counter others used it when the po was busy but this one day I waited in the disabled que ths old lady came up to me and actually said what do you think your doing in that there's nothing wrong with you I just said nothing U can see not that its any of your business she just tried que jumping the cashier told her to go join the que so she cane out with I'm a pensioner cashier said I'm a cashier now go join the que or use another po this lady was before you she turned around and if looks could kill some old people don't deserve our respect but they think its their god given right just because they are elderly .

julieevh profile image
julieevh

There are ignorant people of all ages.

My next door neighbour has MS and during her bad mood swings has demonised me and my family, she is always making untrue allegations about us to the police, council, RSPCA. Now fortunately the official bodies have her measure and just regard her as a nutcase - but it was awful whilst we were being investigated. She is in her early 40's.

It's not age, it is attitude that is the problem.

Julie xx

Huggybear16 profile image
Huggybear16 in reply to julieevh

That sounds like her next door to me x

luvmybabies profile image
luvmybabies

All these stories i can relate too. The older generation think we younger ones SHUD do all the stuff :- hold doors offer seats and so on. There has been on several occasions when ive held a door for the elderly and they have'nt even looked at me (with me with my stick i might add) let alone said thank you!!! At the times ive got on the bus with a bag of shopping whilst holding my stick and trying to hold on they have just looked and starred at me while im tryin to get a seat but no 1 has ever given me a seat. And from now on im not goin to be holdin any doors for any1!!!! Love to all soft n fluffy hugs to all xxx

roserogers profile image
roserogers

You should never feel like you have to explain yourself or feel intimidated the way you were made to feel... I often get on the bus with my free bus pass & sit where I can, it does seem @ times you need a visible aid, like a walking stick to be able to sit in certain seats & I either have my 4 wheeled trolley or stick with me when I go out & nothing if I feel strong enough, so never feel you have to explain yourself or feel intimidated... it not your fault. I too respect the elderly & have looked after them but sometimes, it hard to say but they are the worst for these things, I've had opposition from both elderly & women with prams because of my trolley but not once have I felt I need to explain myself. I wouldn't because we all have rights & those with unseen conditions like fibro are no different, just because we don't ware a flashing hat with it on doesn't mean we have to explain ourselves. use your buss pass & never feel you need to explain yourself ok...

Hugs

Rose

So many of us can relate to this thread Ozzy, I know I can! I have missed many a bus stop because I stood up too late and the bus driver sailed past even though I said to him that I can't leap up and walk on a bus that is driving at full speed. Even though I pushed the bell well before the bus stop, it didn't make any difference.

I used to try explaining to people about my Fibro, now I don't bother. Most people haven't got a clue - I know when people look at me they think "She looks ok, what's her problem?!" - little do they know! Like everyone else here I have an invisible condition, no-one can see my pain, how much my entire body hurts and aches and how permanently exhausted I am.

Go ahead and use your bus pass Ozzy, don't let petty ignorance upset you. You know you are genuine, it doesn't really matter what anyone else thinks. Your conscience is clear. Do whatever you can to make your life easier and more comfy and if that means sitting on a certain seat on a bus, go for it!

Here's a hug for you! ((( hug )))

Extremelygrumpy profile image
Extremelygrumpy

I was diagnosed with fibro at 25,,, I guess I was lucky to develop arthritis 4 years ago.. I walk with sticks and have disabled bus pass.... Cos I have sticks I sit at the front of the bus...if anyone asks what is wrong with me I just say arthritis and they say oh you poor dear etc etc... I never mention fibro it's too much hassle.

VG x

FionaP profile image
FionaP

Sorry you had to endure this. Sadly your husband is right. It will not be the last.

If you feel brave you could speak out with authority that they did not look like ignorant people but as they and you have just learned, what is going on inside is invisible. You did not automatically see their ignorance and they cannot see your disabilities or feel your pain.

Authority in your voice mostly will stop them in their tracks. I am only just brave enough to do this after years of being upset.

No further explanation needed. Best wishes and big hug xx

Ginsing profile image
Ginsing

Bless your Heart ,

What a ghastly experience for you - it is appauling that some people are so blinkered and narrow minded. The old adage "you cannot judge a book by its cover" applies. The Bus Driver obviously felt for you -

if you had been strong enough to use your personality to embarrass them you would have felt better but I think like you I would have kept quiet. I do think if you feel strongly enough a article to the newspaper in your area setting out what happened and how the bus driver was of assistance - I would angle it on the lack of manners in the elderly. It was not how I was brought up and I find it horrifying .

Good luck hun xgins

bonnielass profile image
bonnielass

Hi,

I have had several similar experiences on public transport, one of which i was accused of being a benefit cheat fraud, and i should watch my back as this particular couple were going to report me, and only because i have a disabled walker with a seat, which i always fold down to allow people to sit in same bay, and not one person, including the driver stood up for me, and as a result i was crying and shaking and got off the bus and waited for the next one which was half an hour later.

Another time i went out with a friend and parked my walker next to push chairs and there were no children in them, but when another mum wanted to get on, the driver made me take my shopping off the seat of walker, fold it down and then he took it up to the back of the bus, and several people all moaned about my walker being too big for bus, but i need it as can only stand for a short period of time due to arthritis in spine.

I am now going to purchase a 3 wheeled walker with no seat, just so i don't get bullied and feel intimidated. I now catch a later bus into town so as to avoid these people, but i still shake and feel sick inside whenever i have to use the bus.

Gentle Hugs

Bonnie Lass

morning dont you dare explain yourself. ive always respected old people.but when i had a bus pass like yours and when i had my motabilty car and badge the looks you get.my ex used to say cant you see shes ill.

get off yre soap boxes and talk about someone else.

you will get sued to it.and they had no right doing this...i would have cried as well.i was ganged up once by a bunch of old people for having my i pod nano on little too loud they all shouted at me.

and i gave back.please ignore these ignorant people.they have nothing better to do with there times than to moan i think./xx

jolow profile image
jolow

Hi,Never thought i would be glad of lack of hearing but reading those nasty comments by ignorant people has made me rethink my deafness as a minor blessing.Please just try to ignore any such nasty comments and hold you head up high if not to painful as i cannot rely upon hearing comments i know people are upset with me as i look fit and healthy upon the surface but look closer at my dark circles ,watch how i limp along,see how i have to keep stopping or witness my humiliation when i am reduced to tears of pain then please feel free to look again.I just keep my eyes cast down but my head up as judgement is harsh by the general public who know no better.Huge hugs and use any seat you wish to and if it helps play deaf,lol

LeeLarLou profile image
LeeLarLou

Hugs to you Ozzy, i don't use public transport as i live too far for it to be of any use to me but good for you and good for the bus driver, sometimes pensioners forget that yes they paid their dues (fighting in the war, paying tax) but it's us, the working generation that pay tax these days that goes towards their pensions... and it annoys me that folk are having dla and esa and other benefits taken away that are needed to live, keep warm and eat but who will pay our pensions when we come to retirement age which could be 75 by then... my mum used to say there's no fool like an old fool lol

xxx

Midori profile image
Midori

Sometimes I despair of the older generation, and I'm one of them! It gets SO embarrassing!

A couple of years ago my son was on crutches for 9 months, awaiting knee surgery. He got on a bus and took a disabled seat, then was shouted and screamed at by an old lady for using the seat! The bus driver intervened, but she still couldn't see the justification for my son using the disabled/elderly seat. After the other passengers shouted her down an Inspector told her to leave the bus.

Cheers, Midori

ladymoth profile image
ladymoth

I'm 64 - so very nearly an OAP, but my relatives have instructions that if I should EVER become a bad-tempered, selfish, ill-mannered, inconsiderate old biddy like some of the examples I come across daily, then they are to shoot me instantly!

I always use the front seat of the bus if there is no-one else around who appears to need it more, tho' I once gave up my seat for a girl obviously in the late stages of pregnancy who really needed to sit down.

You should have heard the snide comments from some very sprightly oldies who obviously had no need of the front seats. I told them that they should be ashamed of themselves, and that their years didn't appear to have brought wisdom or common sense!

Take no notice of these silly old b*s, and know that so long as you follow your own good conscience then no-one can criticise you.

theshadow profile image
theshadow

I call these nasties OLD AGE MENTIONERS! They seem so proud of their age now they are pensioners, & think the rest of us are second class citizens! They have a god given right to moan, complain & criticize about the rest of us.

Thankfully there are some nice caring, quiet OAPs, I'm not saying all are the same. Just ignore the OAM's & pity them that they have such little going on in their lives, they get wound up so easily & spout venom coz they have nothing better to do!

Hold your head high, you do not have to justify yourself to anyone!

There are some great replies & comments above.

Gentle hugs to all xx

SootyB profile image
SootyB

I work with the elderly most of the time, and whilst most of them are truly lovely, grateful for the service we provide, and genuinely interested in the well-being of others, a few of them are horrid, nasty people, who have probably been this way all their lives, but now feel that they have earned the right to show it. Respect is something that is given because of the way someone behaves, not because they've reached a certain magic age without falling off their perch! Try to ignore them in future, because I guess we all know it'll happen again, or work on your snappy retorts, so you can really give them one in the eye from we, the invisibly disabled.

Round of applause to the bus-driver, though! And you, for making them look small on your departure! xx

kasp767982 profile image
kasp767982

Sorry to hear of your upsetting experience. The first time it happened to me was when I used the public disabled toilet. We have all seen it happen in the past, especially during summer time in busy area's, where somebody legitimately uses a locked Disabled toilet with their key & then holds the door for the next person to go in & the next & next, even though these people don't have the disability.

It happened to me, was busting for the loo & there was a queue in front of me, which was fine so waited patiently until I realised that these people were not disabled at all & as one came out she stood in the door way of the toilet & called out to her friend (who was about 50 yards away) that she could use it now, even though there were obviously people waiting.

I spoke up & told her that she was well out of order & that this toilet was for the disabled only. I was told in no uncertain terms that who was I to tell her when I was clearly not disabled & wait my bloody turn. By now most people in the queue, including an old lady with a stick had wandered off to use the main toilets.

Eventually this young woman came out with her mate & deliberately closed the door behind them firmly turning to me saying "up yours you interfering cow" Now you will have to use the other toilets.

The look on their faces when I took my Radar Key out of my handbag & unlocked the door was worth the wait I can tell you.

Some people I am afraid just go by what they see & don't think twice at abusing fixtures out there designed to help the elderly & disabled.

Mind you, I don't think it would have made any difference at all to that particular woman if I had no legs,I think she was just a nasty peace of work through & through.

Sadly, it is something that we just have to toughen up about & allow it to go over our heads

Jane x

Jaja2014 profile image
Jaja2014

This shit haunts my days

I would love a lil sympathy bt often have to clamber upstairs On bus cos all the seats r taken downstairs. Bus drivers usually quite ignorant before they see my freedom pass. I've complained about training drivers as the disability is invisible: so the stigma is real.

I'm "good looking" got told I'm too pretty to be depressed by professionals, (prompted an episode of wanted to SH my face) pretty sure my pains been taken less serious by docs in the past.

It's irritating stigma. Been through it with mental health frm teenage years bt to deal with chronic pain and people think I'm lying is too much.

People judge a book by the cover so quick. I have an OT asses next week so worrying already he will judge. 🙀

You may also like...

havin an invisible illness is not good,

i have had fibro now for 12 months, its getting worse, i have been told by hospital that i need to...

Today I got a letter from P I P

What can I expect now, I got an appointment with a Rheumatologist?

few minutes, I didn't even have to say anything, she said \\"Have you heard of fibromyalgia?\\" at...

i just want to cry today :(

is the reason i have this illness i know i always say because you are strong enough to cope and...

Have I got fibromyalgia?

I have some symptoms similar to fibromyalgia, I started with this 5 years ago. Although it never...