May I ask how come it feels like that the world in which we live is made up of people who "judge books by their covers" no doubt others of you out there who suffer from the many forms of this frustrating disease will be able to relate my personal examples include being asked why I am using a lift in a two story building in which I work,looks from Joe public on why it takes me a while to get up from sitting either on the bus or else where and being made aware of "hobbling" from point a to b whilst using a walking stick ( if I feel either brave enough or just really cant move so good on that day).
Personally I think that because WE don't have a blue badge (disability badge) around our necks and some of us are younger( than what people assume is a correct age for arthritis) we are made to feel that we are putting it on etc.
My point is this I hate that Joe public thinks that arthritis in all its glorious forms only effects older people and any one below 50 is either lying or lazy( at least that's how it feels)
Rant over
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pat66
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I know what you mean. Last year even my Rheumy nurse looked sceptical and said how well I looked!! No excuse for that! However, even those with terminal cancer or severe heart problems can look well at times. I suppose it's society's way however unacceptable. A bit like assuming those wearing hoodies or covered in tatoos are bad when they can be some of the nicest people you will meet.
I sometimes think I need a t-shirt that says "If you only knew ..." and maybe "L 40.50" on the back.
My disease has done damage so severe to my feet that repair surgery really isn't possible. The result is that I cannot walk or stand for more than about five minutes, or on a really good day, ten, before I'm stopped dead in my tracks by pain. I've made a conscious decision that this will not curtail my going places and doing things, so I travel on a mobility scooter. When I get to where I'm going, I get off the scooter, and walk perfectly normally. I know people wonder: oh yes, I see the looks! What they don't know is that I do intensive physiotherapy in the pool several days a week to keep the "walking" muscles strong. Nobody sees the joint replacement scars on my hips and knees either. Nor do they have a clue about the fatigue that plagues me daily. To them, I look like a perfectly healthy and mobile (but obviously very lazy) woman who chooses a comfy ride rather than walking. Meanwhile, I so wish that I could take a hike and climb the stairs!
It's their problem, really, not mine. And yet there are times that I just want to get into their faces and ... hmmm...what would I say? I really don't know.
Total get what you mean by wanting to say ...sorry what was that ?!! Sorry to hear about your issues I wish there was just a bit more understanding or media coverage on the plight.
I am not as far along with my condition but my heart goes out to you.
Good morning pat66 ..... It is frustrating when people get impatient when I can't get the coins out of my purse or pack my groceries fast and other daily activities others take for granted. On bad days I feel like biting their heads off but in my heart I know that would do more damage to me.
I am so glad to find this community who are so supportive and caring and don't mind a vent & rant! Thank you, all my lovely friends ....
Keep warm and take care. Sending big hugs to all.🤗🤗🤗🤗😘
You learn to have a thick skin and just tell them to f""k off. I get a lot of funny looks because nowadays i look so well and i am using a stick and a scooter. xxxx
I have had arthritis since I was in my early thirties and once, when I was parking my car in a disabled bay a man yelled at me that I wasn't disabled so I said 'Aren't I/ That's wonderful. Are you a healer or my new consultant!,' The word 'consultant' impresses stupid people like him. He just went on his way with a very red face. He was a lot older than me and I wonder if he was 'pretending' to have arthritis. No one can fake that pain.
Thats a good answer Keana - You could say "Oh my God a miracle has just occurred I am no longer disabled, thank you so much for healing me. The Louder you say it the more embarrassed he/she would be.
I agree totally. I am 44 and tired of looks when I park in disabled bays until I put badge out and mums at son's school saying your ok now aren't you you look great. Or when are you going back to work ..... dread being asked how I am as look a bit better but still in a lot of pain.
Yes, I like many others can sympathise with you in many ways as I am sure everyone goes through this every day obstacle. I have had RA now for 45 years and was diagnosed when I was 24 so have experienced this ignorance on many occasions. In the beginning my pain was so bad that it was a real effort to get out of bed in the morning, get washed and dressed and get to work to have really hurtful remarks made against you. My hands were so painful that it was a real effort to lift a telephone (old Bacolite type - yes I am that old!). As a result, I have had since 5 operations on joints with replacements. I have for the last 10 years been having anti-TNF (biologics) and Methotrexate amongst other medication which is wonderful and I believe it has given me a new lease of life. I still get quite bad flares which knock me down to size, but on mthe whole I look quite fit and well and people I meet tell me this. If only they knew how I feel some of the time. I have learnt over the years it is not worth telling people what you have as the majority do not understand and know the difference between Osteoarthritis and Rheumatoid and they have always got something far worse. Arthritis is associated with 'old age' in the eyes of the majority of members of the public and they think that the majority of people will get some form of aches and pains that they will call 'arthritis' and you just have to put up with it as a result of getting old! Until the medical profession or associated bodies or even the media publicise more often the difference between Osteo and Rheumatoid Arthritis the 'Joe Public' will remain ignorant!
Thanks for your reply - and yes it is 'terrible' but he doesn't want to look at anything to do with RA so I now don't bother and just do what I can and for the most part ignore his snide comments but just now and again I need a good moan and to feel sorry for myself. Today I feel good take care xx
Thing is we have an invisible disease. I pay no heed to people I don't know who give questioning looks when I use my Blue Badge, they're of no concern to me & for all I know they may have their own struggles. The ones who do matter, friends & relatives, understand how it is for me, well apart from one who refuses to try to understand, I admit that bugs me but hey, if it's only one then that's not too bad!
I'm sure calling it RD has made a big difference in their understanding what I have but I also have OA so explaining the differences has really helped. Calling it Rheumatoid Disease opens up questioning & depending on how much is asked depends on whether I explain in depth or not. As you would expect most thought I have "just" OA because the damage to my hands that it's caused is all that's on show & explaining I also have RD has helped open up questioning.
I wouldn't let it eat you away, those who don't understand don't matter, you need all your strength to get through the day without worrying over people who won't listen. We understand & that's all that counts.
Oh YES. I am awaiting diagnosis for RA but am collecting autoimmune diseases.
I was recently verbally abused for sitting in a disabled chair, having being delivered there by car - whilst in airports I use assistance. My husband had gone to fetch me a drink - I was sitting in the middle of 3 chairs which were nearest the gate check in labeled disabled and my husband had put a heavy bag on one of the other chairs, a couple walked up and stared at me, when I didn't respond the man said 'well, aren't you going to move the bag and move up?' To which I replied that no I couldn't (because I literally couldn't) and my husband would be sitting there anyway to which he said 'well he isn't here now!' It was very upsetting and the stress exacerbated my Myasthenia gravis, weakening me more. Then another couple came up and did exactly the same thing! My husband returned to find me in tears. At arrival at the destination airport I could no longer walk, hold my neck up, keep my mouth shut nor my eyes open - I look as if I stroked out when like that- yet no-one tried to help my husband cope with me or our bags.
I completely get your rant!
PS- Myasthenia gravis - literally extreme muscle weakness - is an autoimmune disease of the muscle/nerve junction - it is neuro-muscular. Until I was diagnosed even I thought I was either exaggerating or lazy as that is what I had been told. Oh and if anyone else says how well I look and that I must be 'better' I will not be held responsible for my actions - they only see me on my good days!
I should think it's partly a cultural thing. What you had experienced, did it happen in the UK or in the US? I tend to find the whole "forever youth-worshiping" culture (regardless of age, you need to be fit and well) in the West often comes by neglecting (or at times, expressing overt aversion to) those, who wouldn't live up to certain "common standard" dictated by the "public". But I am not shocked by what you encountered. It's SAD.
I agree it is very sad. I was in Malaga airport, Spain - returning to UK so mainly English passengers - certainly the 2 couples who confronted me were English and obviously 'healthy retired' (wearing walking boots & knapsacks) so why they felt entitled to sit in disabled marked chairs anyway?
I think what was so upsetting was that I sometimes do feel a bit of a fraud in a wheelchair because I can walk but need frequent rests, however, my husband (a fit 82 with a pacemaker) refuses to travel with me now unless I am in a wheelchair. I was also just not expecting it as I was having a bad day anyway which is when I feel more fragile. I thought I had a pretty tough skin but I just could not get over the lack of basic courtesy, let alone lack of empathy. One of the partners did pull her husband away looking quite shamefaced when she saw my face which was already showing signs of weakness.
What I think I have to focus on is that it is their shame not mine!
What a reply ,thankyou for being so honest I truly believe that this community is amazing and if one person new to the site or not can take inspiration from your story WE are on the right path.
Second of all apart from trying to help you I bet you husband was livid (god bless us who are lucky enough to have other halves that love us "see Lorna above".
I see you too have had the " your looking well today!" Speech as well, seems to be a constant theme with the non believers . I believe the response should be along the lines of...." You mean I don't look as tired as I normally do or feel or that I am moving a a speed that is expectable for you"
I appreciate that it is very tough for young people, but I can assure you that it is t fun if you ARE old. I'm 71 , but I know that a lot of people think I'm in my 80s. I agree that the name of the disease is unhelpful. I often say to curious strangers that it's an autoimmune disease. If they ask which one then I see this as an opportunity to educate them. I often feel like replying "do you need to know?" as I know they are asking out of curiosity rather than concern, but I am too polite, and it's just possible that I might need their help!
Last week, an elderly man commented "it's not much fun being old, is it?" I replied "I don't know! I've actually got a young person's disease" !
In general though, I try not to worry about what others think. It's not something I can't control and I've got enough problems.
Joe Public Ignorance! I shall think about the title next time when I encounter one of these to amuse myself. I often think about "Karma Bus"..one of these days, these ignorant people would be hit by KB.. Until they experience the day to day reality of sickness / long-term, chronic health problems, they will never understand what we are going through. There are so many different forms of disabilities; you do not need to be on the wheelchair 24/7. In some days, I look like *S*** but I have no plans to stay indoors doing nothing only because I look like S****, aches like ***and feel like****. I have a life to live just like others do. If the public didn't like it, not my problem.
Like you I've had those looks mine since the 80s now I have grown a thick skin too go with it but it still gets me when parking the car in the disabled space the looks could kill not using sticks any more because my wrist are both fixed with rods and just can't hold them but do they think we would take up valuable parking just because it's there , thank you for letting me have a moan too x
I agree with you totally - I work in a 2 storey building and sometimes take the lift depending on how I feel that particular day.
Never explain yourself just give "the Look" - stare straight into their face - as much to say "Yes, and, what's your problem".
Also someone on this site said if you feel you need to explain yourself "just say you have an inflammatory disease" because when you say you suffer from Arthritis, people assume you should be like their old grannies who had knobbly fingers etc., they just don't understand.
Or when they say "you cant have arthritis you look good or too young" then I say "Its marvellous what make-up can do these days !! "
I understand what you are saying because I've experienced it too, but don't let people make you feel lazy or you are lying, after all your feelings are yours not theirs don't let them have any control over your feelings, don't allow them to press your buttons.
They are being judgemental and its a bit like being racist, prejudging people, however its not a crime like being a racist is - it should be.
I agree it should be classed as something. In regards to the work side I would love to do that only the company I work for are not the type and its employees you take on lightly
Sickening SIX Times there is a three letter abbreviation people use in texts it starts with ( w t ) I wont put the rest on as I am not sure of the rules suffice to say I am disgusted and ashamed that this has happened to you
I feel same I been off work due to problems with meds I go to work for blood test and everyone says you look well must be better now I just want shout from roof top you have no bloody idea how I am I got moon face and piled weight on oh Yer I feel great ha ha. So I can understand how you feel let's hope things ease for us all and maybe make badges for our self .sorry if I said horrid but I feel horrid as nothing sorted for me yet. Rant over.
I have had quite significant osteo arthritis since my late 30s and developed RA in my 60s which in my case makes a nonsense of one being an old person's disease and the other being a young person's disease. I've always looked well and fit even though for a long time I have fumbled with money, have had sore feet and, more recently have also struggled to write, walk or stand. These days I tend to ask for help - tipping out my purse in shops so they can take the correct money or asking someone to move my bag for me - I even asked the girl in Argos to fill in the forms and collect the goods for me as I couldn't stand for long enough.
I usually say that my hands and legs don't work properly and if they ask why, I say that I have two different kinds of arthritis and do they know that there are a hundred different kinds of arthritis?
I take your point but why worry what other people think. There but for the grace of god springs to mind.
You have a disability, and there are several forms of disability, I for one wouldn't want to be labelled 'disabled' (even though I am) and joe public like with lots of things have opinions based on lack of knowledge and understanding, until one day they get an ailment (god forbid) and then they can suddenly change their opinion.
Don't worry about them - hold your head high. This government labels us all scroungers, spongers, the lowest of the low so perhaps where the perception originates from.
Government definitely needs to pay attention and change its labeling system because we on this site are a fare few hundred and no doubt that there are probably more web sites discussing the same thing, that would make for a large percent of the voting public....think about it mr Cameron
Hi I totally agree, I have had RD since I was 36 I'm now 57, I still get dirty looks and tutting when I park in my blue badge bay. I also have severe COPD. I think the only way to convince people would be to drag myself across the floor. I was challenged by a man and his wife in the hospital car park two weeks ago. I parked in a disabled spot, this couple came in behind me but I could see him waving his arms at me and shouting. I eventually got out of my car and he was stood there shouting that I was a disgrace and ranting on about old disabled people having to park at the other end of the car park. I explained I was disabled and had a blue badge so he demanded to see my badge, so I showed him the badge, he literally threw it back at me and started ranting about benefits cheats. Well thats when he got my temper, I told him it was near impossible to get a blue badge, not only elderly people are disabled and a few choice words. I then set off slowly to the hospital he then shouted it was all show. I went to see my Rehumy nurse and guess who turned up in the waiting room. He was just going to start again when his wife told him to shut up. I was reading my kindle and she could clearly see my hands were damaged with the RD plus one of my fingers looked like I was making a rude gesture as it had stuck out at an odd angle the day before, it was locked and badly swollen. She apologised for her husband. I simply replied he needed educating about the disease because your immune system does not care about age. It attacks children right through to senior citizens. And if you tell people you have RD they invariably say " well I have that in my knee and I'm not classed as disabled ".
Shazbat
Disablism is currently out of control because it is not formally recognized as illegal / a criminal act unlike racism or homophobia. You are wide open to all sorts of covert and overt prejudices. Disablism should be made illegal and all these nonsense will stop.
Disablism did not even know that word existed but may get t shirt saying
No to disablism
Printed up.
I think you are spot on about disablism Coniston. But at the end of the day it is just very sad that a person is so full of bile and rage that they take it out on another human being. I'm very fortunate that I've never been exposed personally or even witnessed this kind of abuse. The only kind of discrimination I've faced occasionally is from the medical profession and a couple of nasty nurses when in hospital last year. I sometimes discriminate against myself - ie self stigma "pull yourself together woman!" type of thing. People have only ever been kind to me when I've had my mobility compromised by RA or related problems so I'm horrified by reading of the experiences described here. I can only assume that the people who behave in this way are just miserable in themselves and it's devouring them.
However I've grown up with disabled siblings, both profoundly deaf from birth, and I have witnessed more subtle forms of discrimination all my life through them. People saying things like "poor things are they deaf and dumb?" to me in front them for instance. Or when I had very bad eczema on my face and my hair fell out as a kid people used to ask my mum if I was infectious!
And I don't think it's about the word arthritis as is often said. My mum used to call her arthritis her "rheumatism" and this has equally age related connotations. Young people can get osteoarthritis too and the ignorance is really about how awful arthritis can be in all its manifestations. In my experience if people are going to be nasty they just will be nasty whether it is because someone has a very disfiguring disability or because they have an invisible one. They are usually very unhappy, jealous individuals to be pitied.
Tonight I heard that my friend's 25 year old son is lying critically ill in a coma having had a cranial aneurism. Was he too young to suffer a stroke? Are the children with cancer or rare diseases in Great Ormond's Street too young to get sick? Of course they are but it happens so society at large needs to get over its horror of disability and realise that arthritis is one of many diseases that causes all sorts of misery to sufferers of all ages just as strokes, MS, cancer all can do too.
You would think that if all of us fellow RA sufferers have each explained to at least 10 - 50 people the message would be getting through to non sufferers. BUT it isn't.
I sometimes wish we looked ill on the outside and fine on the inside. Then people would know what this disease is really like.
Its not easy to educate the ignorant, especially if they don't want to be educated. At 29 I hear you're too young for arthritis! All the time, and I do think people truly believe we are making it up. On a good day I walk reasonably well and I hear oh you're moving better, are you better now? Or how is your knee? It looks better now (because I have been suffering with one hugely swollen knee for the last year)
For me the frustrating thing is trying to get people to understand how much more it affects, but then I feel this is self inflicted because before my knee swelled up to the size of a football and and I had to use sticks I didn't complain about the pain from other joints I just got on with it!
Now if anyone one asks me how are your knees I just say ' they are still knees... Just about'
If people want to understand they will ask the right questions and I will explain those who don't want to won't and I just smile and get on with it.
Let's face it, this is going to be a long journey and a lifetime of judgements!
hi Pat, et al - I may have looked at this post B4, don't remember thanks to Thrombocytopenia, BI and short term memory. however just reading some of the many replies again with suggestions on how to inform/educate people when we conditions that are not obvious to Joe Public - made me think I'd happily and love to wear a Sandwich board (if I was strong enough to carry it) that said on the front as I was being stared at........
I know what my problems are - so what's yours?
....on the back, when they pass and turn round to stare again ..... It would say
so does my Consultant - I hope you won't need one any time soon!
------------------
Or is that all a bit strong and too much wishful thinking on my part?
Great reply I too wish I had one of those boards but maybe made out of foam ( weight and all that) perhaps we could all get one from the doctors when we are diagnosed...hahaha.
I hope you had a good Easter and are feeling a little better. I had to take my rings off for several days, just like that my knuckle joints swelled up,,just managed to get them back on today - wonder how long that will last! Have you ever had your thyroid tested? I only ask because I wonder if it could be a thyroid or vitamin or hormone deficiency and the last two are known to be part of thyroid, or HPA axis - when metabolism goes up the they all seem to be linked anyway.
People think at because you might try to wear make up or look ok, and yes, just over 50 that arthritis is only for (sorry) old folk, these are ignorant people who just don't know any better, as maybe their dear old Grandma might have a touch of Arthritis, but not fully appreciate e different forms of it and how it can affect all age groups. Just got to wince through it and grimace at the stupid people
OH Pat this is so true, I've had it for many yrs. I was diagnosed with Polymyagia, then told arthritis and in later life that i have fibro and ive been in pain since i was about 32 yrs old and all i remember is that everyone one thought i was depressed and everything was in my head & i felt like a hypochondriac.
I just remember feeling very much alone with my pain and people really need to be educated on how debilitating these diseases can be for People.
Some days i cant open a box of cereal or hold a cup of coffee and some ppl.look at you as if to say, " oh come on, you can do that" & I'm thinking well, I might look strong enough to do it but I can't do it"
It's like mental health, can't see anything so you must be ok !
Even now, I am blessed to look a lot younger than I am & i still get ppl.now say "Arthritis, with a smirk, your a bit young for that, arnt you".
Thanks for the message, we all here have been or are at different stages of annoyance with this problem but whilst on my way to work on a cold bank holiday Monday your comment made me smile dam right ....if they only knew.
Have a good day and again thanks for comment.
Absolutely, totally agree. I am 52 and look young but have quite severe inflammatory arthritis. My default setting is to be polite and empathic but I am feeling a little sorry for myself today and feel that if I have to listen to one more person telling me about and seemingly expecting sympathy for their achy joints, minor gout, etc I am going to want to punch them in the face. I know have arthritis in both hands to varying degrees, both knees, both ankles and have pain in my right shoulder and right elbow and that makes like difficult. I don't want to hear aches and pains from people who can walk about and carry out most tasks just fine. Sorry my rant over. Just had to listen to my father in law who is in his eighties going on at me about the gout in his hand and how he is having to rest it on a pillow and I was 'tell me about it.' Everything I do flippin' hurts from putting jeans on to feeding the cat. Sorry my rant over too.
Know the feeling Apbrooke, it's so annoying sometimes 😈 hope your feeling better today. I won't tell you about my pain haha sorry only joking. I can't help it lol
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