So I'm newly diagnosed. Feeling terrible, mostly due to the meds and the fatigue. After a couple of months of life with RA here are my top five comments that make me want to scream:
1. Oh it's just rheumatoid arthritis. I bet you're glad it's nothing serious
2. Oh methotrexate, yes everyone I know on that has died. Terrible drug prescribed by lazy doctors
3. Why are you buying in to these medications. You can treat RA yourself with diet and yoga, you don't need to be on them. It's your fault you are ill.
4. Ah right so it comes with fatigue and we need to adjust your workload...yep fine. So about you taking on your colleagues work whilst not she's on maternity... great knew you could do it
5. You need to keep active...like really active..don't give in to the tiredness that's just lazy. You can't give in to this disease you know.
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Gretchy
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But thinking back I wonder if I was guilty of such an attitude?
17 years go when I was diagnosed I honestly thought taking painkillers with the odd steroid injection was all there was to it!
Unfortunately I now know better.....but there are so many treatments available Gretchy....don't despair.
I had seven symptom free years on Mtx...it was a wonder drug for me during that time.
I have today just had my second RTX infusion, spoke to others there having 3d &.4th infusions....all doing well - so I am very hopeful this treatment may suit me & give me good many pain free years.
The way I now see it is to talk to your Rheumy. If you are worried he/she will hopefully know how to help. I have given up telling friends how I am....they really don't understand.
Have a good old moan here Gretchy .....unfortunately we've all bought this particular T shirt & we do understand.!!.
AC
If I say I have rheumatoid arthritis people always say is that all everyone knows someone with arthritis and has a wonder cure bit if I say I have a auto amune disease they are lost for words it's the arthritis bit that's confusing
To avoid misunderstanding, and because my joints aren't usually affected, I tell people truthfully that I have an auto immune condition which affects my blood and can manifest in pain or damage anywhere my body. One colleague surprised me by saying "What, like arthritis?". So, happily, there is some awareness with some people.
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Hi Junebee - I have wished for the last six years that it had a different name. Everyone seems to have osteoarthritis (I guess aging) and RA = OA in their minds...
Unfortunately my grandmother had severe RA so I probably knew too much. I was quite horrified by my aunt though (her daughter) who said pah...they can cure it with medication now. It's simple nothing like mother went through. Tell her to stop being a drama queen!
Haha! The longer you've been diagnosed the quicker you'll be able to throw snappy answers back at those who just don't understand what RD is! This is one reason many of us now refer to RA as RD, 9 times out of 10 changing arthritis to disease stops people in their tracks & question what it is, an easy opener for explanation & hopefully greater understanding. You probably know the answers even now! Anyway, welcome & I hope you still need us, seeing as how you've got nothing of any consequence which doesn't need treating....or already keffled out!!!
Like you 'Heels' I have been using RD for years now as it can sometimes make people think twice and ask what that means and that is the opening we need to explain exactly what it is we are struggling with everyday. A few have asked more questions and said that they had no idea that there was a difference.
I have learned too to keep the explication short and concise or they will loose interest. A simple 'I have an auto amuine disease that attacks my joints and in some cases can attack organs too'.....or something similar usually does it. Great to see this being addresses as it just does my head in sometimes no matter how hard awareness campaigners work on our behalf the message just down not seem to be getting through........rant over.....I needed it today. I am looking after you two parents of 88 and 92 and this morning I had to cancel an appointment for my mother at the Memory Clinic as I just can't move the upper half of my body. I had to make another appointment for her. Tomorrow morning I have to take her to the Urology Clinic in the morning and my father to the Healh Centre in the evening to get a 'lump' burned off his elbow....I'm not complaining about having to look after them but there are days I just don't have it in me to try to push or lift a wheelchair......rant defiantly over......my very best to all. XX
Yes, that's how I approach explaining RD too, I usually say the only thing the two have in common is that arthritis is derived from the Latin word arthron meaning joints but they're affected in very different ways, then I wait for the cue to explain further & I don't get it I leave it there. Sometimes it's enough but what's even better is when the questions start, I've even made 2 new 'friends' out of acquaintances because it lead to further conversations totally unrelated.
Seems you're undoing all the good your cruise did you Jean. Elderly parents, I can relate to that but we do it without giving it a second thought don't we? I lost my parents young but we're going backwards & forwards to hospital at the mo, f-i-l is in isolation. My h had a huge row with his brother over visiting, or rather lack of, well, he'll miss him & regret it when he's gone that's all I can say. Be kind to yourself my lovely. x
All that sort of thing can cause problems within famailies. I'm the only daughter and the only one living in Ireland so it is just expected that I take on the mantle. I think even if my four brothers were here, they live in America, only one of the could be relied on to help.
I am having an awful time of it at present as we had to legal advice as my mother has dementia, my father is 92 and is just going to fade away if he gets any thinner and he only has a fraction of a kidney working. He says nothing and keeps it all to himself whereas my mother could complain for Ireland. She has been a hypochondriac all her adult life and dementia hasn't improved it! It f she survives my father my son, who has power of attorney, will be in charge of everything (so Irish handing over all the power to a male while the women do all the real work).
Anyhow, if my mother has to go into a home the house will be taken to pay for it as none of us could possibly pay £600 PM. This doesn't please some of my brothers as they were looking forward to the house being a large part of their inheritance.....so a row is brewing.....I can't take all that on board, I have enough to deal with. It is what it is at present but I always repeat to myself that nothing stays the same......and hope for the best!!!!
I didn't know that about arthritis being a derivative of the Greek 'arthron'.......we learn something everyday don't we. Take care darlin.....XX
I agree, it's archaic isn't it that the male is the decision maker yet it's the females who are expected to do the day to day caring. I was surprised just how much care homes cost, I learnt the other day that my s-i-l's dad pays £2,760 a month, she's complaining that at 93 & still alive she'll have nothing to inherit & that she's already spent the proceeds from his assisted living apartment! It is a horrible time but as sure as anything it happens to us all. x
The original NHS was meant to care for people "from the cradle to the grave"! Maybe once upon a time.....
I learned a long time ago to just let it go over my head. There is no point in arguing about it anymore as I m the one who always comes out the worst.....nothing stays the same and my mother and father will be gone .....it is what it is and when it's all done and dusted I will be able to hold my head high and the rest of them can go 'to the flames of hell'.......that's a nicer way of saying what I want to say. Lol. X
You have my extreme sympathy.. There is book out on amazon called "Can we please talk about something more pleasant?" and it is about a lone daughters experience with her aging parents. It was so true it was actually funny, in an "I recognize that.." sort of way...
The problem I find is that I'm overweight, so everyone just judges me based on that, like I've casued it myself, I'm 33 and a big frame, but I'm also pushing 20st. GPs, friends and family all look at me like, 'well you are fat, you will get bad joints'. The kicker is that I first started suffering in 2013 when I was running three times a week, doing martial arts twice a week and going to the gym twice a week. This stopped a lot of that and I was misdiagnosed with gout for two years, which everyone leapt to because of my weight. Now it's finally been diagnosed, people still act like I've done this to myself - it wasn't like I wasn't trying!
I do understand I was the same. I went through 3 Dr's at the surgery all said"it's your weight"but I would not give up 4th dysentery new for blood tests which came back RA.fenestration and RA gosh I felt like seeing the others and saying "I knew it wasn't all down to my weight started dieting last year and am now down to below 15 st from 18.7 st. I wish Dr's would listen xxxx
Yepper - I've had that same reaction - "Well, if you would lose weight, the RA would go away".. Sure... it's really that simple...
Hi there, It sounds like you could do with some help on the work front. Do give the NRAS Helpline a call (0800 298 7650) and also you may find the NRAS booklets on work really helpful " I want to work" (which is for you as an employee) and " When an employee has RA" (which is for employers/HR) they have rights and responsibilities that they should comply with and you are protected by the Equalities Act 2010. If you haven't already been in touch with NRAS then do take a look at the website nras.org.uk for lots of useful information and also you can call for your free "Newly Diagnosed Information Pack".
Maybe I don't get out enough, or my contacts have been more understanding. Those are top draw comments! And the ones where they tell you what to do - with no experience or knowledge.
"Auto-immune disease affecting my joints" makes most stop a moment and you can see them pausing to process, search through their heads for data and then give up!
Always the ones who try to be helpful with "Oh, I know someone who used xxxx and they're fine! You should try it!" I do think of replying, "Great, and double blind clinical trials of it's success you can point me to?" but I know my response would have a scathing and cynical tone, so I don't!
Hey, new group to be formed: The Screaming RA Sufferers - SRAS! For when the ignorance gets too much, call for SRAS! I imagine the pitch and volume to be like that Harry Potter character (Moaning Myrtle?) in the toilet block...
Excellent summary Gretchy. In the early days (I was diagnosed in 2012) I did not bother telling most folk that I had RA. I knew they would not understand and would make a comment that would make my blood boil. Even the Rheumatologists make off the cuff remarks that make me angry. When it comes to 'Joe Public' that is totally understandable. We are all put into 1 pigeon hole - arthritis. I too now say I have RA and I quickly follow up with the fact that it is a autoimmune disease.
I totally understand how you feel RA has ruined both my knees and I'm on the list for a knee replacement and I'm only 52 and constantly struggle. What I find is peolpe say oh yeah I've got a bit of arthritis in my foot just take a few paracetamol for it. I'm like noooooo mine is a totally different ball game! But think that they just think I'm moaning about nothing. The latest comment that killed me was ( we were on a girlie night out) which I absolutely dread now as can't walk far cant wear heels which as you know ladies is not good n it makes me feel frumpy going out in my flats .so.also have to go out without my crutches that im supposed to use for now. And the girls were all dancing so sick of sitting on my own n absolutely love or used to love dancing! .so I had a go n one of my so called mates said "oh I see there is nothing wrong with your knee now ! " .I was almost in tears ! Thinking OMG I will be in agony tomorrow , you have no idea how I suffer. Some people need to think on what they say ! I would never dream of saying anything like that to anyone .I don't expect peolpe to know about RA but they could be a little more understanding. Think I'might use RD from now on . Like others have said it stops peolpe from saying "oh it's just arthritis! .
Love
Dee x
Oh. My. God - You HAVE to be kidding me!. I've heard all of these and more, including "you don't LOOK sick!" but the worst is probably #2, although # 3 is pretty bad too. I can go along with # 3 until the last statement. It is NOT your fault you are ill....
I have seen people on here so tired that they could not get dressed alone, and they are telling you that the only answer is to stay active???
We need to start a list for the newbies in the group with all of the STOOPID comments we have each received.... Like my most recent: "You must have little baby form of RA, because you don't look sick..."
Tested on animals......I did ask about that when I was first put on the Bio's......I was in a terrible dilemma as an animal lover, animal charity supporter, dog rescuer and vegetarian. At the time my body was the shape of a ?, I couldn't walk, drive, comb my hair, brush my teeth, dress myself......I could go on but I think you can fill in the blanks. My lovely Rheumy nurse Bronagh sat and talked it over with me. She told me how my condition would get worse, I thought that was impossible but she assured me it would as my disease was completely out of control. She said the decision would be mine alone and that she respected my principles but that I had to take whatever was available for my own health, the alternative was too awful for me to contimplate. So I took the Bio's.....turned out none of them gave me any long lasting relief, six months was the longest I got out of them.
Looking back I don't regret taking them but I wish with all my heart that people like me don't have to make such decisions.
I understand exactly what you mean. I was vegetarian for almost 30 years, and finally decided that I needed some changes. But it is difficult to step from your principles...
People really say insensitive things. I remember way, way back when I was fairly young, I would see older women with knarled and crippled hands and I knew it was RA. I specifically remember thinking "that's a disease I hope I never get" and here I am decades later with RA. I've been played a cruel joke of fate. I've never thought of RA as anything less than a very serious & painful disease. However, I'm sure I've said stupid and insensitive things to others about something without meaning to offend.
I feel you. Sometimes people who depend on you want to pretend that nothing will change.
Well written.
Totally agree with all those and more!! Now hubby gets people saying how well he looks! Just because he's not the colour of ash anymore it hasn't gone away!! Then hubby feels a malingerer and keeps saying he's going back to work! He worked long hours in a physically demanding job! Not possible!!
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