Other People's Perceptions

eugeneg

Hi All,

I have been in a bit of a downward spiral of late. This year has been one long struggle dealing with one problem after another, I am surprised I have kept going! I am probably going to ask the $64M dollar question now, but as my fellow sufferers how do you manage to deal with other people's reactions/perceptions of you and your condition? It sounds daft I know, and certainly over the years I should have become more thick skinned, but sometimes I could just scream at people. It is true that only the ones that matter to you know the truth, my Wife's support is fantastic and despite my 2 kids being very young they know all is not well with Daddy. Some people (mostly blokes) whom I class as good friends seem to forget one day to the next what, if anything, is wrong with me, and colleagues at work look at me like I'm impersonating a dodgy limp or two, or that they feel I'm swinging the lead completely! Maybe I'm being over sensitive or expecting too much of people. I'm nearly at the stage of going into denial!

How do people usually react/treat you?

I'll stop moaning now!

Eugene.

frogmorton

Eugene
How well you just put that!!
I know it was ironic, but I couldn't have put it better myself :roll:
I think it MUST be true that it IS those close to us who matter - and if all else fails there's always us lot on here
Thanks
Toni x

lindalegs

Hi Eugene,

I find how I react depends on my frame of mind at the time. I'm generally easy going and insensitive comments and reactions are like water on a duck's back but if I feel really low they're enough to knock me lower still. It can also depend on who makes comment, most people I readily forgive but a few can rankle. Children have made the funniest comments to me - one once asked me if I was actually an alien, after he saw my deformed hands :shock:

If loved ones or close friends do or say 'inconsiderate' things I take that as a compliment as they're not seeing my disability they're just seeing ME

Luv Legs

katekelly

Nicely put Legs- it is nice when those close 'forget', except on those really bad days when you feel like shouting HELP!!!

I usually take other people's reactions with a pinch of salt but there is always the'one' day when you can't and then you over react with sarcasm or almost an apology for being ill. The one that gets me the most though is when you get the 'You can't possibly know the pain I'm in'- actually yes I do 10 times over I just don't go on about it!!!

Kate x

suzster

oh so true, sometimes people say "i've hurt my arm (or another part of there body!) and i think, you don't know what pain is!! :x

my personal favourites are "arthritis?, you're not be old enough to have that surely!" or "but you always look so happy, how can you be in that much of pain?" maybe because i hide how i feel for fear of being classed and a moaner!

i know other people don't know how we feel but they can be very quick to judge sometimes.
sorry feeling sorry for myself today, what with sore fingers and a poorly baby!!

redpoppy

i let comments go in one ear and out the other now.i have gave up trying to explain that i am in severe pain at times but i still have to do the weekly shop ect.when talking to my friend about my worries about starting my new medication the other day,she thoughtfuly said,oh why dont you come to jamacia on holiday with us next year you said your arthritis is better in the warm weather.i had to say but it wont cure it, it wont make it go away,i still have to take my medication.if only we all could be cured by going to warmer climates.we would all be flocking there im sure.i also get oh have you tried cod liver oil you want to try it it cured my knee :roll: erm yes i have tried it actualy and im afraid it didnt do magic on me.

livinglegend

eugeneg wrote:

Some people (mostly blokes) whom I class as good friends seem to forget one day to the next what, if anything, is wrong with me, and colleagues at work look at me like I'm impersonating a dodgy limp or two, or that they feel I'm swinging the lead completely! Eugene.

If you tell your friends what is wrong with you, don't expect them to remember. When you have several good days then people look on you as cured and forget that its temporary.

At work if you can't manage, ask for help. This acts as a reminder that you have a long term disability which is never the same day by day. :roll: It is a balancing act that takes practice, not easy!

Don't worry about having a moan on here. you ain't the first :P

Joseph 8)

PS. Since when have blokes been sensitive souls?

mash65

livinglegend wrote:

eugeneg wrote:

Some people (mostly blokes) whom I class as good friends seem to forget one day to the next what, if anything, is wrong with me, and colleagues at work look at me like I'm impersonating a dodgy limp or two, or that they feel I'm swinging the lead completely! Eugene.

If you tell your friends what is wrong with you, don't expect them to remember. When you have several good days then people look on you as cured and forget that its temporary.

At work if you can't manage, ask for help. This acts as a reminder that you have a long term disability which is never the same day by day. :roll: It is a balancing act that takes practice, not easy!

Don't worry about having a moan on here. you ain't the first :P

Joseph 8)

PS. Since when have blokes been sensitive souls?

when i was advised to give up work,i recieved a lovely letter from my boss saying'' i wish you a speedy recovery'' :roll: i wish!!!debs

colinone

mash65 wrote:

livinglegend wrote:

eugeneg wrote:

Some people (mostly blokes) whom I class as good friends seem to forget one day to the next what, if anything, is wrong with me, and colleagues at work look at me like I'm impersonating a dodgy limp or two, or that they feel I'm swinging the lead completely! Eugene.

If you tell your friends what is wrong with you, don't expect them to remember. When you have several good days then people look on you as cured and forget that its temporary.

At work if you can't manage, ask for help. This acts as a reminder that you have a long term disability which is never the same day by day. :roll: It is a balancing act that takes practice, not easy!

Don't worry about having a moan on here. you ain't the first :P

Joseph 8)

PS. Since when have blokes been sensitive souls?

when i was advised to give up work,i recieved a lovely letter from my boss saying'' i wish you a speedy recovery'' :roll: i wish!!!debs

Hi How other people see you is undoubtably a problem, you say you are sick, you feel sick, you hurt so bad yet on the outside we look good. I know there are time when we look bad thats the time you stay in the house when you can go out people say hey you look great are you better. Unless you have it you will not understand.

miaswe

Its so annoying when someone asks you to go somewhere and you have to say your arthritis is playing up and you really don't feel up to it, and when they next see you they say 'I thought you were ill!! ' They don't seem able to understand that one day you may feel terrible but feel ok the next. Someone even said to me, its a handy opt out if you don't want to go somewhere just say its the arthritis playing up. If they only knew that you'd really like to be able to say yes to everything, but you don't know how you'll feel that particular day. I've given up now and if they ask me to go somewhere I just say sorry I can't make it and don't bother to explain. Just because you don't moan all the time they think there's nothing wrong with you.

magenta

My work mates are bl**dy awful when it comes to my arthritis. I want to scream every time someone moans about a pain they have i.e. toothache!!! One of the best comments I got was when I was pregnant with my second child. I worked full-time, pushed my first child in a pram, got on and off buses/trains or walked 20mins to get her to nursery (didn't drive at this point) and developed symphisis pubis :shock: I was in a terrible state but still made it into work every day. There was another 'healthy' girl pregnant too and everyone kept saying that it was a shame for her being pregnant, must be really hard etc. then one girl turned to me and said "you'll be fine, you must be used to pain"!!!!!!!!!!!!
Magenta x

tracys

I get the same as everyone else and it really gets to me when people say but you always look so healthy! My cheeks are only red due to the inflammation! And they dont see how bad I really am because like others say when we are really bad we dont go out! I have decided though that to have Arthritsis you must be a strong person because we all do it- we all put on a brave face , we all say the F word - (Fine) when we arent really and I have decided that we got this disease because we are strong enough to cope with it- although it doesnt feel like that sometimes - those that dont bother to enquire or find out about arthritis will continue to be ignorant about it - the people close to me know when I am lying about being fine- but we all try not to let it bring us down and try to get on with life- its not the one we chose but its the one we have been given and because we are strong we try to make the best of it. I know its not easy to be positive all of the time but I try to keep smiling through the pain and know most of you do the same. So heres to us the ones that are strong enough to deal with this disease! Sorry if no one else feels the same as me but that is the way I get through the day now life is far too short!

suzster

oh magenta thats awful, i had spd when pregnant with both mine and that alone (without arthur!) is agony, well done you, i ended up basically stuck on bed rest due to pain of it.
but i do so agrea with other people thinking we are fine because we look fine. i have a radar key to use disabled toilets as i find the extra room and handrails much easier and also i use lifts, if i have a pushchair with me then people can't say anything, but i got a lecture from a train station person for using disabled toilet, i told him i had a radar key for a reason then walked away as he obviously wanted to challenge me more, but worst is people frowning at me for using lifts, i have had many under breath muttered comments for using a lift, i know some people might use lifts when they don't need to but why should i have to explain to strangers why i need to?
what about if we have t shirts printed? that way it would be clear to all? sorry!!

katekelly

My GP (God Bless her) always starts by saying "How are you Mrs Kelly?", I say "fine" and she says "can we have the truth please not what you tell everybody!". :shock: Now some people would take offence at that- but I know that she knows I always say fine no matter what pain and discomfort I'm in. That is a good doctor and I thank God for her each day!!

Kate xx

suzster

yes! my gp is also a mum to a girl in my eldest daughters school, she see's me most days at school, i went to her a few months ago as i was feeling like i was 'drowning under arthur', she made a very similiar comment, she told me that she see's me at school, always smiling, she knows what i've been through since having my daughter and being diagnosed with RA and she was surprised i took as long as i did to go and see her!!
she told me that she see's me putting on my school face and knew i was struggling but couldn't do anything until i went to see her due to patient confidenciality.
it made me realise that a) i'm not as good at covering my feelings as i thought, and 2) some people are able to know and understand how we are really feeling.
if only my friends and family could sometimes look past my fake face and "i'm ok" comments!!!!

slummymummy

Oh it is so frustrating, and I don't know how to cope with it either. I am always bumping into people in the village, or at school, who ask me how I am or rather, 'what's wrong with you then?' Today someone stopped me in the street. She looked puzzled when I said I've got Rheumatoid Arthritis. She said, 'Isn't that what old people get? Why have you got that then?' I sighed a huge sigh and just muttered something about these things being sent to try us.... Afterwards I wished that I had educated her about what RA is, and what it does, but then that may have kept me there for half an hour. She asked me what medication I was on (she did look genuinely concerned). When I told her Methotrexate, she said, 'Never heard of it.' And that was that. Me left still feeling misunderstood.

Even worse than this, one of my best friends, who knows all about everything, went on a rant at me about me taking my 6 year old out of Beavers club on Friday evenings. She was saying how her son LOVED it, and it was such a shame that my son couldn't go anymore. For the fifth time, I tried to tell her that because of pain in my hands, I can't get my 1 year old into the car seat, to drive to school, get him out of the car seat, to pick up my eldest from the playground, put him back in the car seat, to drive home, to get him out of the car seat to go into the house to give them food and change into Beavers clothes, then get my 1 yr old back into the car seat, to drive to Beavers, to get him out of the car seat to walk my eldest into Beavers, then put :roll: him back in the car seat to drive home..... THEN an hour later, PUT HIM BACK IN THE CAR SEAT, drive to Beave :roll: rs, IN the car seat, OUT the car seat AGAIN, then IN, then OUT......AGAIN... and THEN start the going to bed routine (don't ask me abouut that one) :x :x :x :oops: .

After literally spelling it out like this. She still said, 'Oh I know, but it's still such a shame for your son.' I ended up snapping back at her, 'Yes, AND IT'S A SHAME THAT I'M ILL, BUT WE'RE STUCK WITH IT'!!!!'

ARRRRRRRHHHHHH!! (Sorry for the rant again) :roll:

kate21

slummy mummy, it's a shame your friend hasn't offered to give your son a lift to and from beavers if she feels it is so beneficial to him. it's so upsetting when arthur can effect our loved ones like that. it's one thing to cope with the pain the meds etc, but I find the guilt is often the worst

I work with chidren and one day my boss was telling them to stop cracking their nuckles as they'll get arthritis. one of the younger ones asked what arthritis is. (now she should know full well that I have RA, we talked about it at my interview, it's in my health assessment, I often can't do the heavy lifiting side of the job because of it) but instead of letting me explain to the children. she jumped in and said it's when you're in constant pain for the rest of your life and calpol doesn't work! it made me quite angry at first because she is always forgetting about my RA. but actually it has provided a good explanation for me to tell the children. If I can't sit on the floor to play with them or run around the school hall I tell them it's because I have poorly knees and feet and calpol just won't fix it! Then they often seem to understand and treat me a little more gently and offer to help me prepare snack or even tidy up!

jenzie06

I saw my nephew briefly the other day, he's 4 and doesn't really understand about me. It was the first time he'd seen me in the wheelchair so I was worried that he would be concerned. But all he did was give me a big hug and a kiss and ask me if my legs didn't work today. Apparently there is a topsy and tim book that he got which covers wheelchairs. He's very sweet. When I had my hand operated on a couple of years ago he copied me by putting the inside of a loo roll on his arm and went round saying he'd hurt his arm like auntie jenny!

lindalegs

slummymummy wrote:

Oh it is so frustrating, and I don't know how to cope with it either. I am always bumping into people in the village, or at school, who ask me how I am or rather, 'what's wrong with you then?' Today someone stopped me in the street. She looked puzzled when I said I've got Rheumatoid Arthritis. She said, 'Isn't that what old people get? ....................................................................., OUT the car seat AGAIN, then IN, then OUT......AGAIN... and THEN start the going to bed routine (don't ask me abouut that one) :x :x :x :oops: .

After literally spelling it out like this. She still said, 'Oh I know, but it's still such a shame for your son.' I ended up snapping back at her, 'Yes, AND IT'S A SHAME THAT I'M ILL, BUT WE'RE STUCK WITH IT'!!!!'

ARRRRRRRHHHHHH!! (Sorry for the rant again) :roll:

I think it's time you got yourself a new best friend slummymummy because she doesn't sound much of a friend to me :shock: Sorry to be blunt.

When my boys were little, both friends and neighbours, who I could trust, took them to places for me. I can't drive and walking distances is difficult so even getting them to playschool was difficult. When later they went to school, I phoned and explained and school arranged, through the PTA, a couple of Mums in the area who were happy to collect the boys for me. These people have become some of my dearest friends and are always willing to lend a hand if I need it. I still try to be as independent as possible but I have the confidence to know that all I have to do is pick up the phone if ever I need help of any kind.

There are lots of lovely people out there who are very happy and willing to lend a hand

Luv Legs

petmad

I think its they "well you look realy well though" that gets to me. They do not seem to understand how much work and medication , including side effects goes into it.

Oh boy! I am looking good so why am I not at work. Oh boy this is getting to be a sore point with me. Linda

katekelly

I'm 'suffering' from what I call the Steroid Glow! Makes you look fantastic, gives you a 'healthy' round face and does goodness knows what in the long term1 :oops:

lindalegs

The problem lies in the fact no-one can feel anyones else's pain. Yes we look well and the majority of us mask our pain by smiling, joking and putting our best foot forward (if we have one :shock: ) It's the only way forward for us because if we don't do this no-one will want to visit or help out and they won't enjoy our company and we'll all end up lonely old s*ds :shock:

It's all part of the fight against this nasty disease and to be honest I'm proud of myself if folk say I look well because it means that I'm winning the battle

Luv Legs