What to say to people?

Silly question but I found myself stuck a few times this week.

When a neighbour wanted his parcel (heavy box) that was delivered to my house when he wasn't in (he is in a wheelchair) I didn't know what to say so took it to him and today I'm suffering...

When shop assistant tells me the activity table for little one was light and I should be able to carry it (I had the pram also)...

If I go supermarket shopping and would like a hand at checkout?

When family come round and let you cook, make tea, tidy up for them?

and the worst one which has only happend twice, when I get a filthy look if I stumble and shuffle as they assume I'm drunk? thankfully I have been better and walk much better, but what do you say?

11 Replies

oldestnewest
  • Hi Wiliby,

    Its very difficult, I have said to check out girls I've sprained my wrist, and then foolishly said I have arthritis, and felt a right fool!

    i think the best thing is to be honest and say I have Rheumatoid arthritis and I can lift this or carry this or tidy up, but if I do I will be totally exhausted or in pain tomorrow id I do so I'd appreciate it if you could help me . It is really difficult, when you look well to explain. Maybe someone else can give you better advise.

    Gina.

  • Hi Wiliby. I sometimes have to ask for help in shops etc particularly for something heavy (like dog biscuits) or just a day when I cannot carry or lift anything. I always say to people that I have RA, it's a bad day and I need some help. I have never been turned down yet and have always found people very helpful and sympathetic.

    Don't be afraid to say you have RA and need assistance. No one will think any the worse of you. Most people are very glad to be asked to help and willingly give it.

    I sometimes joke to friends that if I fall over and can't get up, the police will come along, throw me in the van and say "she's drunk again". (The police do know me fortunately and no, not because I have been in trouble with them either).

    Because we don't look as if we have anything wrong, I think we are afraid to ask for assistance. We need to be more upfront about RA and tell it like it is not cover up.

    Hope that helps a bit. LavendarLady x

  • Hi wiliby, i used to work in saisbury's and if you go to the customer services when you arrive or call in advance to say your popping in a member of staff will push the trolley round for you and do all the reaching and lifting for you. Even packing and loading into the car. Don't be afraid to ask them for help.

    I no my example is only about sainsburys but most shops should be helpful in every way not just taking your money. :-)

    With the family thing my auntie has bad asthma and it's always been the rule you want it, you get it, drink or eat it and cleanup afterwards. We all no that's the rule and although she hates not being the hostess with the mostess she knows we all know it's helping her a great deal not leaving cups in the sink.

    Be brave start with the family and ask for little changes and you'll be asking the people in the shops in no time.

    Hope my little bit of sainsburys knowledge helps. Good luck

    Marnie xx

  • Hi Wiliby.

    It is very difficult at times, I found that I never admitted to anyone I had RA, I found it an embarrassing illness, and that's an awful thing to say now. Apart from that I didn't want the help I wanted to be so independent, and still do at times.

    But, there comes a time when you find you can't go on like this and people need to know.

    I shop at my local Asda but it's different for me as I worked there for many years, starting on the shop floor then moving up into the offices so lots of people working there now me and what I've been through, so it makes it easier for me and I get offered lots of help.

    Over the years though I have learned that it isn't about being brave or coping on your own, it is though about asking others for help when we know we can't cope,in the end its you who suffers and that's what you have to remember.

    With family and people who are close if they know you well enough you won't have to explain they will already now and understand.

    If someone asks you to do something and you now full well you can't, just be honest and say "I'm sorry I can't I have RA and my joints are very weak, but I would help you if i could"

    It's like lavendaLady said because we don't look ill and people can't actually see anything wrong with us it's makes the situation more difficult.

    I remember going for a drink once with my hubby and because we'd been sitting for a while when i got up to go to the loo I was incredibly stiff, I walked to the loo hanging onto the backs of chairs etc, all the time though I could see people staring and even sniggering some of them, obviously thinking I was drunk. I'll never forget that time.

    You will in time learn to handle people, just the same as you learn to live with RA. I wouldn't stand for any nonsense now from anyone. As time goes on you get stronger both in yourself and in your fight with RA.

    It's also surprising when you say you have RA to others they don't actually now what it is, they presume it's an older persons disease.

    The more we can tell people and explain and the more we can highlight this awful disease the better peoples attitude will be.

    Good luck

    Take care

    mand xx

  • Hey mand you kept that quiet, especially, when i told you I used to work in the pharmacy at Asda. I had some great people to work with.. I think they should be able to arrange help for shoppers too, they are meant to be or rather used to be quite proactive on customer service? xx

    Alison x

  • Sorry Alison, I know I said I worked in admin, I just didn't say for what company! lol.

    They are generally very good with disabled shoppers etc.

    mand xx

  • hey wilby gosh i wrote something similar somewhere - i am embarrassed at saying that i have ra. I used to say that i had a cramp in my leg, pins and needles in my feet, got up the wrong way ........then i would meet the same person three months later with my persistent cramp and i realised what an idiot i was being. But i still don't explain myself at all so i haven't got it sorted yet, i am now internet shopping from tescos - my family are ok, particularly my siblings they tease the life out of me so that is good and it also means that i don't mind asking for a hand to get up if i sit in a chair that has no arms......mind you i rarely will use ra as an excuse not to do something when it is the reason - its 100 mile round trip to my mothers house where most of my brothers live and i will say i have other commitments rather than i am soo tired with this bloody pain....

    so i can empathise Wilby but not offer much in the way of help.

  • Thanks guys

    I'd really thought I'd come to terms with it all, but I don't feel ready I suppose to admit it to others when I'm maybe a little in denial myself, does that make sense? if I'm feeling a bit sorry for myself. I worry I'd burst out in tears if I said it to someone out loud.

    My doctor summed it up last week when she had a student in with her, she says ''Although Angela looks healthy, she never complains and always says she fine, but the consultant and blood results tell me different, she has RA''

    I'm sitting there feeling quite put out, stupid pride :)

    In the meantime I think I'll use the sprained wrist, (thanks Gina) but will take on board all your advice and just tell the truth eventually.

    Thats great Marnie, will ask at sainsburys next time, even some help to empty trolley would be great.

    Saying I have weak joints will also be helpful when I go back to work.

    Mads, that does help, we are all facing the same fears challenges ect and to know others experiences help knowing you’re not alone.

    My sister, who has been the most supportive person to me since this happened rang me up last night and asked if I fancied taking part in a charity ‘it’s a knock-out’!!!!! arghhh and I thought she was the only person who understood, I still can’t believe she asked me, then I told her I couldn’t because I have a flippin cold!!!!lol ahh got to laugh I suppose

    thanks everyone :) xx

  • I'm sorry I so had to laugh at that last sentence because it's rings so many bells.

    You think someone understands and that gives you a sense of relief, and then they come out with something like that "do you want to do it's a knock-out!!"

    In a way you have to laugh and I know it's not funny, but you just think "oh god what do I have to say/do to make you understand"

    And when you said you had a cold, well that's sounds so familiar as I've said it myself in the past.

    It is about coming to terms with and accepting RA yourself before you can begin to expect anyone else to.

    You will find the right way in your own time!

    Take care

    mand xx

  • Reading your comments about reasons for not Being able to take part due to RA made me giggle. I did a 5k race for life in July all because I didn't wanna feel left out of my friends, I honestly thought I was going to die that day. Hhaha I've had some of the best excuses going for not going clubbing with friends or to festivals. I've even said I'm really sorry I can't leave my mum on her own at the moment she needs me hahaha the truth was I couldn't leave my mum because I couldn't do anything with out her. I've had colds, flu, looking after neighbours dog, looking after grandparents, family emergencies, broken down car, once I even said my bank had been emptied by fraudsters lol :-) I told my friend I couldn't go due to having no money to which she replied you only got paid two days ago, in a panic I couldn't think of anything else and instead of saying sorry i cant come dancing as I walk with two sticks told her my bank account had been emptied hahahaha

    The silly things we do ay....... :-)

    Marn x

  • Having grown up with two profoundly deaf sisters and having a son on the autistic spectrum I suppose I'm used to witnessing stares and experiencing the great variety of reactions and responses from people towards these disabilites. Both autism and to a certain extent deafness are invisible also - but my sisters have been deaf from birth so have developed their own immunity to a hearing world. Some people look away or even scarper and most look a bit nonplussed unless they have experience of autism or deafness themselves.

    My sisters can be quite confrontational if they think that people are being ignorant but on the whole they choose to be oblivious and just laugh - especially if they are with each other or their deaf friends.

    Autism is harder to cope with than any of these disabilities because people are so scared of neurological disorders and many dismiss autistic tendencies as bad behaviour (teachers for example) but at last I see my son now being very upfront with his friends and girlfriend about his very black and white tendencies and his inability to suffer foolishness or conceal his horror at certain things like salad and vegetables. He hates it when plans change and has a frequent need for time out on his own and he can be very brutally honest and abrupt. But he's also very funny!

    I guess I'm saying all this here because sometimes my sisters and sons get into really hilarious situations as well as awful ones and it makes us roar with laughter but also despair of the "normal" hearing or non autistic world. Is there such a thing as "normal" really? I know many of us take for granted that if we are down or sad or angry we can play loud music or dance about or go for a jog (not me anymore for either dancing or jog) or pick up the phone and speak to someone close or enjoy a sunset .

    This is exactly what experiencing ill health and disability should do for everyone who suffers it or knows someone close who does - including people with RA.

    It should remind us not to take our health for granted and to appreciate being able to see, hear, taste, move about without pain etc. Most people are lucky in some of these areas at least but very few are lucky in all of them Williby.

    In my experience educating people in your own charming way is really important but it has to be be entirely on your terms and at your own pace and using the instincts that I'm sure you are lucky enough to have, unlike an autistic person for example! The people who ask things of you that are impossible (your neighbour in a wheelchair) would probably respond very well to hearing why you can't do what they are asking of you. Most people have to cope with some form of adversity in their lives and it helps to at least appreciate what you have got when reminded of what others haven't.

    Sorry this is so long but Mand's poem and this post of yours made me think about what other people who don't have RA think of as normal too. I don't think that what each of us think of as normality is actually true for that many people in reality. It certainly hasn't been for me ever but then I've been lucky to have been surrounded by people with courage and humour all my life! Tilda x

You may also like...