I am using a little sarcasm there...it seems to come in spades at regular intervals from all kinds of people. I am , as previously noted in another blog, on the road to acceptance. I wrote the previous blog whilst in a state of calm realisation that if this is IT then that's ok. Then came the party.
The party was a celebration for my dear Dad turning 80. I had sent the invites..booked the hall..ordered the food..booked the bar etc..all running smoothly. I realised an hour before I was feeling rather anxious..these people who knew me as bubbly and active were going to be confronted with someone quite different this time. But what the heck..I am ok. I can do this.
Half an hour in..'oh lord Jane have you had a fall??' 'Oh my what have you done to yourself?' 'Arthritis??Oh do you know my knee is just as bad...' I bit my lip for a while..most of the party dwellers were nearer to my Dad's age than mine..and on it continued.
An hour in, a kind hearted gentlemen felt it was his absolute duty to take me to one side and offer a complete gem. 'You do know my dear that I had RA don't you...' (I nod suspisciously, waiting for the tale to unravel) 'oh yes..the dr. said I should take medthatxen (methotrexate? I offered) and I did for 6 weeks. I went on holiday and forgot all about it and here I am.cured..nothing wrong with me. 'Did you go back?' I asked..'good grief no..no need and that's what you should do..get off those drugs and start living'. 'Right..well I do have alot of pain and fatigue still..plus quite alot of damage already in my feet hands and hips..even a year into it..' I even began to doubt my sanity as I was saying it as his face was a combination of disbelief and pity 'Well look at me 'he said. and promptly twirlled around on one foot.
I later heard from my mum that he had suggested that I stop all drugs and rub a mixture of olive oil and sage on all my joints. My mum later suggested homeopathy and my mother in law has since suggested vitamins/healer.
I have to say that people are kind hearted and well intentioned and my outbursts reflect my frustration in the apparent lack of knowledge and the invisibility of this disease. If homeopathy was going to cure me or vitamins or olive oil do you think I would be injecting myself with potentially harmful drugs?? Do you really think I would reject a 'cure' to continue like this? Do you not know that I have scoured the interent, asked zillions of questions and bored my familt stupid with my quest for a pain free day??
No. And so on we go until the next daft comment arises and we take that split second choice of which response to use....The tilt of the head and gentle nod.'oh really?' 'yes I must try that' or the less tactful but understandable scowl and groan.
Remember. we are given this life because we are strong enough to live it.
Have a good day everyone and try to ignore the bad and welcome the good xxxx
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lulul
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apologies for the spelling mistakes folks sore fingers to blame and couldn't be bothered to proof read!!!
Yep it's that old "just when you thought it was safe to come out of the water" syndrome. It's so bloody hard.... I used to spend ages trying to explain RA and what it means to me,,, but as you know a waste of time. Everyone is just well meaning BUT.....
My skin is growing thicker by the day, it has to. I continually get to a point where, "I'm getting on top of this and feeling so much better" only to be confronted with "S**t what the hell is happening now" and "Did that person really say that to me - I thought they understood!"
Like you say onward and upward, ignore the bad and celebrate the good. I am having a good one today, but still having a day off the farm and doing what I want and utterly refusing to help out even though "Ah you are having a good day then" was a pre-cursor to my other half asking me to do something.
Hi Lulu, just last week I was at the hospital waiting to see the consultant, there I was in the waiting area sitting opposite a woman with RA with her husband, She went in for her appointment and her husband started up a conversation with me. "have you got Rheumatoid Arthritis?" yes I replied and that was all I managed to say on the subject. I had an half hour lecture on not taking any of the drugs but to take "cod liver oil" instead! Wonderful for the joints, I've no doubt it is I was thinking but RA is a disease. All the time he was chattering away about how drugs do more harm than good and we don't need them, and all the time I was thinking your poor wife she must hear this everyday.
Apparently she had only ever taken Sulphasalazine as her husband didn't want her to take anything else! She'd been taking them for 12 years and was in a terrible way now as they no longer worked for her.
People just don't understand the differences they hear arthritis and that's it,subject closed.
It is frustrating but we have to grit our teeth and try to ignore them.no matter how hurtful their comments can be.unless they have RA they will never understand.
Oh Mandy..that poor woman. I am lucky to have a very well informed supportive hubby and I would be utterly lost without him I do grit my teeth most of the time then I think maybe we should just keep banging the message out there so eventually people just get it. Maybe..maybe not x
If we dont say anything then ignorance prevails and we will never get our needs met and the appropriate services. I work for a major dementia Charity and public awareness raising is essiential. I always tell people about RA now. I dont feel that angry because People dont know any better really. Its kind of like Dementia. I bet most people on here dont know that there are over a 100 types of dementia and the youngest person to get dementia was 6.
think people are badly informed and misguided.. they confuse arthritis aka oesto arthritis and its milder cousins. relations of RA with RA.. I have given up with it all plus dont to bore them senseless cider vinegar any one!!!??
A good answer I find to all the suggested lotions potions & general voodoo cures suggested is to say "Theres an idea! I must mention that to my Rheumatologist on my next visit"'
Have a look at the 'butyoudon'tlooksick' website - they have some great t shirts!
Personal favourites:
This disease must do wonders for my appearance..
Everyone keeps telling me how good I look!
and
My disabling chronic illness
is more real than your
imaginary medical expertise.
or
Warning!
Bad flare day.
The link to 'gifts' is top right hand side under a photo of a cushion - there's also a 'Sick Humor' section that has had be snortling with laughter.
The woman who set it up / runs it has Lupus but there's a lot that's relevant to living with a chronic disease.
Cece x
in reply to
Hi I have also found one with loads of stuff about RA - like RA Chick and RA awareness with butterflys and stuff and mugs and lots of other slogans. Thought I might purchase something
RA Chicks are also on facebook and they also offer a great support network.
As for the comments I think Ive grown hippo hide now my skin is that thick through all the comments!!
When I cant walk due to the crippling pain in my feet I go to work in my wheelchair and the comments I get are well you could walk yesterday, Ive even heard sniggers of lazy cow!!
Well stuff to em we all know how much we suffer with daily!
That's terrible hun..I have similar experiences with my stick..most days I have to use it ..on rare days when I don't and I am feeling better than normal the comments can bring you down in an instant
in reply to
My god thats unbelievable. How can people sink so low? they really have no idea. At least I hope not otherwise its particularly evil. xx
I've not used my wheelchair for work yet, but I can still imagine 'Lazy cow' syndrome. So angry reading this! Want to wheel over their toes, then repeatedtly stamp on them again & again.
Some horrible people out there in the wide world and I have the pleasure of working with them too.. its woof, woof central nhs dogs home!!
(This is my 2nd attempt at posting a reply to this blog - I had to remove the first one as I felt so angry towards those 'laymen' who think they know what we should or shouldn't be taking', 'what we should or shouldn't be doing' and those who have the attitude that 'we managed to do it yesterday but can't manage to do it today')
If they know so much how come we are all still suffering?
Judi ..maybe it's our mission to put them all right!! Exhausting though it is I suppose we have to just keep trying..and if just one person gets it then we have achieved something at least. USA have TV programmes dedicated to RA and living with the disease so I think the UK is just not doing enough to educate the general public, not just in RA but lots of 'invisible' diseases.
yes because that one person tells another and slowley peoples awareness is changed. So if our relatives get this awful disease then they may be treated with more insight and empathy.x
Hi Lulu. I agree with everything you said. I had a good one the other day at church. I must say before I tell you this that the lady in question is very well meaning, bless her. She asked me how I was feeling because I didn't look well and I said " well actually, I am in quite a lot of pain today." Her reply was " Who have you not forgiven? Illness is 95% in the mind" So I went on to tell her about x rays, consultants etc etc but I don't think it made an impression........Sparkle. You are right. I think we are all blinkered. We may know a little about a lot of things but not everything about all things. Dementia at 6 years old? I never thought I would hear myself say this again post RA but "How lucky I am" My children are healthy. x
Similar experience in church for me too and I was so taken aback by her kindness that she had taken the time to think about me but dumbstruck by her lack of knowledge. This lady gave me a pot of 'potion' (literally) that she had made ready to spread across my joints. I could only thank her for thinking of me and I didn't have the heart to correct her this time.
I too have had my fair share of helpful comments. I try to remember how much I knew about RA before I was diagnosed - which was very little - and try to understand where they are coming from and remember that it is well intentioned. Easier said than done! when appropriate I try to explain what RA is so they have a better understanding
I agree that we need more RA awareness and I also think it would be useful to drop the 'a' word
Hear hear! to all of the above, must revisit the 'butyoudontlooksick' site again, I used to be always on there in early days! Rheumatoid Warrior on facebook has some interesting stuff too, but I get the sense she is quite disallusioned, can't blame her, don't think U.S. public medical is that great, but they seem to get anti tnf as more or less first line with private insurance! Once approved which can be difficult...
As much as we moan here the folks in USA have more to worry about..there are alot more deformities in joints as some people just don't have the insurance to pay for meds.. terrible
Until they have had ra, they don't know what they are talking about. My biggest problem is fatigue. Am constantly tired and in pain all down my right side, but nobody takes notice, apart from my family. Trouble with this disease is you can't see it. If you had cancer and lost your hair you would get all the sympathy goung, but because you don't look ill they think its just the weather. I don't know about you lulu, but i'm 55rys old and most days i feel 90. Tell the gentleman and i use that word lightly as any man worth his salt wouldn't have talked to like that, to go to hell, thats the strongest words i dare use on this site. He clearly didn't have ra or he would be singing a different tune. I wish you you well and hope you get some relief. I find ithelps me after i've been on this site, there are some lovely people here who will talk to you and vent their spleen as well and boy does it help. Take care, Sylvi. xx
thank you hun..just had another dose actually..ventured out to a local am-dram night to see their latest performance..got very sore and stiff sitting but struggled on..in the interval a 'friend' whom we haven't seen for ages asked what I had done to myself. My wonderful hubby jumps in to save me the hassle and she says..oh my mum has it too but as long as it's sunny and she avoids tomatoes she's fine..I rest my bloody case.
Well done your hubby, he must truly understand now whats going on! What have you done to yourself indeed, what sort of fools are these?
The sooner they change the name of RA the better, my mam says years ago they just called everything a touch of Rheumatism, and thats where it got derogatised (I think I just made up a word).
Also, as there was no treatment before steroids, a lot of mumbo jumbo cures built up! Ie. avoiding nightshades, etc etc! Maybe they do aggravate inflammation who knows! I know there is a lot of research into the build up of crystals in the joints! Grrr! If only we could extract and sell!!!
Looks like by the current news all fruit & veg is going to kill us anyway!!!
I've just read on the facebook group RA Chicks that someone was told that her mother use to rub WD40 in her joints for the pain. That made me laugh!!!!!
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Any advice/help welcome, first-timer Seronegative R.A newly starting Methotrexate. Abit scared.
