Please don't lecture me . . .

dreamdaisy

. . . . when you have no concept of arthritis (of any kind) and what it does.

When I meet people who have cancer I don't tell them to increase their vitamin C, when I meet people with MS I don't tell them to drink more water, when I meet people with any kind of chronic condition I don't tell them that increasing their Vit D will make a huge difference to their lives. I don't do it because I don't understand their conditions, the impact they have on life or how they feel. It appears though, that when one has arthritis you're fair game for advice from all and sundry.

We had some of our oldest friends round last Saturday, we've known them for twenty-five years and it's usually an easy and pleasant evening. One of our guests recently completed the Three Peaks Challenge and is, justifiably, proud of her achievement. As the evening went on she became increasingly 'vocal' about what I could and should be doing to improve the quality of my life, that if I tried a little harder things would be so much better, that if I decide that I don't have that much trouble I won't have. (I love the idea of that, today I can't be bothered to have arthritis so I won't.) This from the same woman who instead of cancelling a meal due to toothache sat through the entire evening in stony silence because she was in pain. I'm familiar with pain, I understand pain, I commiserated but was told 'You don't know what it feels like.' Wrong. I do but what you don't understand is how to cope because for you it's a rare experience and it goes away.

She is one who is always ready to offer unsolicited advice on any thing at all, her complete lack of experience of the topic has never held her back and probably never will. Is it good to have that degree of self-assurance? I don't know. I wondered about arguing back but recognised that she was on transmit and the switch couldn't be flicked so I just told her what she wanted to hear: that she was absolutely right, that I am totally feeble and utterly lazy.

I'm sure that we've all been on the receiving end of such nonsense and I still haven't found the right way to deal with it. This has been bothering me all week, the things I could have said ricocheting through my mind, tethered to a comment from a neighbour who, after having a new hip, told me that I should have that done because it would sort me out. On being told that I had arthritis in other joints too she was surprised. 'I didn't know you could have it in more than one joint.'

Experience can both broaden and limit one's thinking, yes? DD

LignumVitae

I think we have all been on the recieving end of this - it's like the zeal of a convert and other than grin and bear, I too have yet to find the right response. I think there are two classes of lecturer though.

The first and perhaps more bearable I became aware of when my dear lovely dog became terminally ill. People who 'knew' us from seeing us around would ask what was wrong with my suddenly thin boy with shaved patches from procedures and tests. I would explain and in a bid to find a solution to something there was no solution to, they would offer advice or help. We had links to supplements that their friend with a dog with a similar problem had great results with, we ev en had offers of reiki. It was all terribly well meant and an attempt to offer hope and help to a situation that they themselves could empathise with because they didn't want to have to face such a thing with their furry friend. I've had similar well meant offers with myself and my arthritis. Newspaper cuttings on drug breakthroughs, supplements, diet advice and when given by some people it is a vain attempt to offer support because they can't iamgine what is happening but would like to help and most importantly, they take the time out of their lives to think and hope for you. That is beautiful humanity and for those people I smile, thank them graciously and feel a little more loved.

Other people however are pains in the proverbial. They once had a problem with one joint and this supplement helped them. My sister in law and her special diet etc etc. There is no point in reasoning with these folks. I've tried. i've attempted to explain the difference between their problem and mine. They don't begin to understand the nature of a chronic disease, see us as malingering types and huff when we don't get better. Theirs are the 'but you don't look ill' type of comment. Theirs is the range of vitamins and cleansing herbs rather than blind reliance on medicines. Rather than thoughtful and well meaning these folk are plain rude, unable to see that my arthritis is not so easy, unable to understand that the drugs I take I don't want to take and I don't spend time pondering how I would prefer to rub myself in balms and eat a different diet because I did dabble at the start but my arthritis takes no heed of such attempts. Instead I have to squash it with poisons. It isn't a nice thought but all the research, all the guidance, all the medics and even the enlightened alternative folks can see that it is the only way. My acupuncture gives me a brief respite, the chap who tried reiki ended up complaining I gave him sore fingers :roll: from my problem and the lovely masseuse who Mr LV surprised me with told me she was sorry she couldn't do more but hopefully it would give me a little bit of relaxation. It did, it was divine whilst she did it.

The bit I really don't understand is why these people feel the need to provide the lecture and get annoyed at my response. Why I am the unenlightened one for not heeding their approach and wisdom rather than they being the tactless and rude one for presuming to be able to tell me how to manage things better than I already am doing and why my informed decisions about the few options open to me are wrong. Do you even know what a DMARD or an Anti-TNF is? No? Thought not.

stickywicket

Wow! Reading LV's response to your thread I'm tempted type that that is the definitive answer – eloquent, kind where kindness is due and incisive in its analysis. I think I shall copy, paste and print it for future reference and, as I can add nothing of worth, I should then shut up but, as you know, that is not my style :oops: The jaw still works, albeit with difficulty. So....

dreamdaisy wrote:

.When I meet people who have cancer I don't tell them to increase their vitamin C,

I'm sure many do get told this, though, as there's a guy in the US (where all good fallacies go when they die) who insists massive doses of Vit C will cure cancer. That's 'cancer' as in 'arthritis' ie no particular type specified. (And why would he as that would limit his clientele?)

I'm not sure what you can do about your clueless, and tactless, friend. A temporary injection of PsA might help. One that would wear off within a week. (Mind you wouldn't we all like that )

If she could just experience, briefly, how it's not just one, or even two, limbs that fail to articulate correctly but the whole kit and kaboodle ie the thigh bone aint necessarily 'connected to the knee bone' particularly well and similarly the knee bone to the ankle bone etc etc. 'Dem dry bones' and others had, no doubt, also worn themselves out preparing the meal which she was probably tucking into with gusto while sorting out your misspent life for you.

The problem, or one of them, is that so many people have 'a touch of arthritis' so they think they know all about it. We, who have not so much a 'touch' as a persistent wallop know differently.

theresak

I can sympathise; empathise; gnash my teeth with you, DD as it happens to me as well, indeed to all of us.

LV`s answer was marvellous - like SW I should copy & paste it & print it off for when I need it.

My mother always said that when you were ill, you found out who your real friends are - she knew this because of the actions of some 'friends` when she was diagnosed with leukaemia. The words `drop` and `hot potato` spring to mind. The same happened to me.

At first I was very hurt, and more than a bit confused, but I am also bright enough to know that `real friends` don`t act like that. I think I have mentioned on this forum before now how one of my `friends` said I should go to a faith-healer.` I think her main concern was that I could no longer be relied upon to give her a lift each week to choir. On the other hand, I have another friend who doesn`t drive, but makes sure she is in touch at least once a week by phone, and will not visit if she is the least bit `germy.`She has struggles of her own, but would be there for me if ever I needed her.

I try to just ignore any stupid remarks now, but only a couple of weeks ago, my sister-in-law said I should just get a new knee, as apparently she has `never looked back since.` Given that my knees are in relatively good condition compared to the rest of me there seems little point in me visiting the Knee Shop. Now the Shoulder, Foot and Hand shop, I`m in business!


Only another RA sufferer knows how we really feel, and of course I think we all hide our struggles well - it`s in our nature to be stoic and get on with things. We don`t court sympathy - I`d hate myself if I ever felt the need to do that.

LignumVitae

Thank you both. It's a crying shame I can't spell receive though :oops: :oops: :oops:

As for friends that drop you, as my good good friend of many years (who still calls me Tinkerbell) once pointed out to me - there are many more people in the world to make friends with and that's an exciting way to look at the 'loss' of those who run a mile!

stickywicket

LignumVitae wrote:

. It's a crying shame I can't spell receive though :oops: :oops: :oops:

And you thought we'd noticed? :oops: After 'Northumberlland and Hartlypool (See Tezz's thread on CC) it looked good to me

Tezz, I've found one good thing about RA is that I've found some terrific friends. The rest, as you say, aren't interested but the ones one makes with RA are second to none. (And they all have a great sense of humour.)

mig

Wow you people take my breath away.This came to mind "Don't judge me till you walk a mile in my shoes or lived a day in my life" Mig

dibdab

I'm feeling everyone's frustration here, and I guess we've all experienced the well meaning but ill informed idiots who lack the empathy or imagination to even begin to guess what it's like to live in our shoes :oops: ....sorry but it touches a particularly raw nerve!

My particular approach is to (try to) smile understandingly, thank them for their kind thoughts and mention that we all have something to bear, this is my particular burden, and I wouldn't wish it on anyone, not least because there is no cure for it, and the best that I can hope for is that the drugs hold it in check without too many side effects......it sometimes shuts them up for a while! :?

I have to admit too that I then sometimes get rather selective about how often I choose to spend time in their company, after all my energy reserves are at best limited, and I'd rather expend that energy on being with people who don't irritate me beyond words!!!!!!!! Having said that my reserves of patience are low this week, it's been a rough one in the RA realm.

Deb xx

dreamdaisy

Thank you, one and all, for your understanding and comments - I feel better for writing about it and appreciate your indulgence. It has been stewing and has now worsened.

'I did the Three Peaks Challenge in Two Days, Woo-hoo!' s husband last night sent Mr DD an email. Many moons ago we would all meet on a Friday evening to play tennis and he knows that I (like him) love Wimbledon - his last birthday present from us was a Wimbledon 2014 bath towel, genuine Christy original as used. I have a pink one as befits a girlie. He has Centre Court tickets for the entire day on July 01, he was going with his sister but she has cried off after twisting a knee. He has offered the chance to me but I have turned it down. I had to. I have requested that he wears a properly furry coconut bra over his official Wimby Tshirt so I can spot him (and the other who can go) in the crowd. I bet he doesn't.

I spent an interesting morning at a Motability Open Day at my local Citroen garage. I can feel hassle-free motoring approaching . . . . DD

barbara12

DD LV and Mig have said it all... we all know different...but its so hard to ignore these people... :roll:

daffy2

I can feel hassle-free motoring approaching

Ooh which option are you going for DD - the private chauffeur permanently on call or the rather more radical 'blast the blithering idiots off the road'?

Starburst

I don't know what you mean, DD. It's quite sensible that my next door neighbour's sister's cousin's boyfriend's hairdresser's dog walker's son's friend knows far better than my rheumatologist. I should definitely listen to her over the person who trained for 10+ years and has been qualified for double that. Pah, what's a medical degree after all?! Dr Google is the way forward.

GraceB

I was so cross when I read about this that it's taken me a while to think what I'd like - and can :!: - say.

Some people are just thoughtless, they have no idea what it's like to live with arthritis. I've had to educate some people around me by telling them about "The Spoon Theory" and "There's a Gorilla in the House". Having read this, I then sometimes see a look of comprehension appearing on their faces.

My honorary sister in law can be a bit like this. She sees that I look well and doesn't really understand what's going on with me. I resorted to showing her all my meds - the look on her face was one to behold! She's "advised me" on what foods I should or shouldn't eat on several occasions.

Other friends have sent me newspaper clippings too with a note saying "there's a wonderful new cure for your arthritis in this article from the xyz paper". I scan read said article and 99.9% of the time it's a new medication being trialled for RA and not OA. I explain this to the person who sent the clipping, they say "ah, I didn't realise, I'll remember". The next time there's something in a paper or magazine, yet another clipping arrives from the same person, again it's to do with RA rather than OA. It's tiring keep banging the drum and you just feel like you are wasting your breath to be honest.

I hope your friend DD enjoys the tennis, however if you choose to watch it from the comfort of your home you'll have the best comfy seat. Free refreshments on tap, good (and sparkling clean) "facilities", fruit you don't have to pay a fortune for and you won't get wet if it rains (I hope).

I hope your trip to the car dealership has a positive result for you.

Take care,
GraceB

stickywicket

GraceB wrote:

Other friends have sent me newspaper clippings too with a note saying "there's a wonderful new cure for your arthritis in this article from the xyz paper". I scan read said article and 99.9% of the time it's a new medication being trialled for RA and not OA.

And they're always 'trials'. I was told a cure for RA was 'just around the corner' 50 years ago. Ah, but which corner? I'm still looking for that elusive corner

dibdab

When you find that corner SW would you draw us all map please?
However, being a woman I'd probably have to turn it round to face the way I'm going.....map reading isn't one of my strengths
Deb xx

DebraKelly

I acutally had the same argument with my husband the other night!

He kept suggesting things for me do to help with my RA and I get that he is only trying to help and that he is saying this because he doesn't want to see me suffer.

But there are certain things we can't do................

Like I am ever going to the Edinburgh Marathon or Climb a Mountain?
Aye right!

None of us asked to have this considiton!
We're the ones who have to live with it!

juliep123

I have comments like this especially from my aunt in law. Over the years she has suggested every 'treatment' from cider vinegar to cannabis! The problem is she really believes she is being helpful . When I asked her where she thought I would get cannabis from she told me my husband (her nephew) would know where to obtain it!!! I've now given up arguing with her, I just smile sweetly and let it wash over me.
Julie xx

dreamdaisy

I thought this would touch a nerve, I know it's cropped up before on here but with so many new people this may be their first chance to relate their 'idiot advice' stories - it always feels better to let it out.

My busy three weeks have caught up with me, the unthinkable happened on Sunday evening when I left part of my meal and more than a third of a pint behind, just wanting to get home to bed. (Mr DD polished off both.) I was in bed by 7, and spent most of yesterday morning asleep. I rallied briefly in the afternoon so was able to cook, but I went straight to bed after and may be returning there now. The urge to sleep is overwhelming but I feel cheated that when I do I don't feel any benefit from it. :roll: I had to do some food shopping yesterday and found that my flare diet had crept in to the bag, so I think that tells me all I need to know. Experience tells me not to fight it, and I am fortunate in that my life is now at the stage where I don't have to, so I'm off to beddy-byes. Yaaaaaaawn. Snuffle. Snore. DD

LignumVitae

You know things are bad when even the end of a pint is too far to go. (((((()))))) I shall avoid all advice because nobody needs a lecture. I will say rest up DD, as frustrating as it is, we all know it's the only way to start fighting back.

stickywicket

I'm with LV. When DD walks away from a pint things are serious. Sorry, DD, but it's hug time. ((((())))).

speedalong

Oo-er I think I'd have killed the "friend" who did the Peaks Challenge. As for the neighbour, she needs to keep her nose out it!

Speedy

sunnysideup

LV`s answer was brilliant thank you - I may copy it as well for when I need it.
I've been diagnosed with RA for a bout six years. When it all started my much-loved, know-it-all, grown-up daughter kept on informing me that I could deal with it by diet choices. I thanked her but continued with the meds (Methotrexate) which has kept me going apart from occasional flare-ups for all this time. (Am now having 5 week long flare up in hands and feet).
My husband, who mostly is very supportive, sometimes has to be reminded that I have RA (and Osteo) and I just can't do some things! And he goes in to problem-solving mode and tries to work out what's caused the latest bout of pain. So it's not even just other people - sometimes it's those who are closest.
When it started, a friend from work told me about another friend of hers who had this (RA) and who apparently just 'gave in' to it and stopped getting out and about - so judgemental! The implication was that I should make jolly sure I didn't become like this. (I am self-employed and very busy)
Oh yes and sometimes if I say I have RA I get people who say the thing about the weather - does it get worse in cold/wet weather - it doesn't help really.

stickywicket

sunnysideup wrote:

When it all started my much-loved, know-it-all, grown-up daughter kept on informing me that I could deal with it by diet choices. I thanked her but continued with the meds (Methotrexate).

Thank God you had the sense to do that, sunnysideup. The latest research shows that the sooner RA is treated aggressively (with meds, not diet :roll: ) the better the outcome http://arthritiscareforum.org.uk/viewtopic.php?f=47&t=44945

Problem solving mode? Aaaargh! It's a bloke thing.

For 'unhelpful suggestions', see my 'arthritis bingo' thread lower down. Others have chipped in with some great ones.

Sarahd1609

I hate it when people go what's wrong with you, had too much of a good time the weekend. When I then explain that's not possible on my meds and that I have arthritis I get told not to be so stupid, it only affects old people, or well you don't look ill. If i'm in work I have to be polite but I was out shopping one day when this random person asked me and when they said I was probably faking it for benefits or that it couldn't be arthritis as I was too young and didn't look ill, I said well you look too old to be that stupid but hey looks Can be deceiving. My sister has problems with her legs after an op went wrong and she constantly tells me I don't understand what it's like to be in chronic pain on a daily basis. Sometimes I think people don't understand that just because You don't physically look unwell as you have been so good at painting in an ' I'm fine' face, or use walking aids or have a great big plaster that hey can see, they can become either very ignorant or first rate diagnosing consultants. Sorry. I'll stop ranting now lol xxx

TrishaW

I so agree with these comments. I've had so much 'advice' over the years about different therapies, diets, exercises etc. Do people honestly think i wouldn't have tried everything I could? The worst is when people critise you for taking any medication "it can't be doing you any good" "I would never take any drugs" etc etc
I think people find it hard that they can't 'make you better' so can't stop giving suggestions...they're trying to help but make things so much worse. Or they've read about a miracle cure in the newspaper and reckon they're an expert.....arghhhhh.
Dealing with all of this makes life so much harder.....

daffy2

This isn't unique to arthritis is it, it's part and parcel of being human, and in many cases springs from a genuine concern to help. The problems come with the people who give the 'advice'(eg relatives and friends who should know better), and the manner in which it's presented. In earlier times 'cures' were inflicted for reasons which had little if anything to do with the sufferers' welfare and everything to do with fear, religious bigotry etc, so in some respects we've made progress, although sadly there remain remnants of that mindset. Over the years I've had my share of 'helpful suggestions' for IBS and allergies, and now OA has added to the opportunities, but having read what some of you have to put up with I count myself lucky that by and large it has come into the category of irritating rather than hurtful.