Grr! Coping with friends' reactions

After telling her about my diagnosis of RA, my underwhelmed friend said she has "a bit of RA in her shoulder". She also said she hadn't been referred to a rheumatologist because it was "just" RA. and then went on to tell me what I should eat. I swallowed my annoyance and tried gently to explain that RA is a whole body, auto immune, chronic disease and there was nothing just about it, and that there was a lot of conflicting information about diet and different things work for different people and she refused to concede and insisted she was right, so I changed the subject.

I've found that some of my friends have been like this... Minimising the impact of my diagnosis while telling me what to do. Others have been great, saying something like "that sucks. Do you want to talk about it / tell me a bit more about it?" I know this is a bit of a generalisation, but the girls tend to be the ones who minimise and instruct and the boys listen and empathise. I prefer the latter.

How have you coped with friends' reactions?

38 Replies

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  • This isn't easy. I have a friend who I haven't seen for a while who keeps hoping I have recovered and suggesting herbal things to take. I've tried explaining that this is the disease I've had since 1999, and that a little change like that wouldn't help. I've lost a bit of weight recently and she hasn't seen this and I always have the feeling that she's judging me. I think I've decided that we will become more distant now.

    Other friends have shown me how much they can be relied on (or not) during this particular horrible year. One or two good men friends have been really helpful, helping to distract me, and making very discreet enquiries.

    I think we all have to deal with this and I do think that RA sorts out your really good friends from the lesser ones.

  • I think I can rival this! (Not that it's a competition, but at least you're not alone!)

    When I was first diagnosed, things had been pretty bad for some time. I could walk a few hundred yards with great difficulty, sitting down & getting up caused severe pain and fatigue was so bad that I could stay awake for no more than a couple of hours at best.

    Typically, the path to diagnosis had been a long one and there was not a lot I could do other than lie on the sofa & google, trying my best to learn and understand what might be happening as opposed to scaring myself stupid.

    A week or so after diagnosis we went on holiday with my brother-in-law and sister-in-law, a great little place by the sea. On one slow, painful trudge across the beach I tried to explain what PsA was to my sister-in-law. After a few minutes she commented "you've gone very sort of medical since you've been ill. Have you thought of re-training as a doctor?" Bizarrely, I actually tried to envisage doing medical training whilst barely able to move and hardly able to stay awake! Couldn't quite see it somehow, though maybe I lack ambition.

    She also watched me like a hawk that holiday. The one time I managed to get out of a chair without grimacing, she questioned me closely along the lines of "how come that didn't hurt so much? Did you forget to groan?" etc. etc.

    Truly, some people are fools. And sometimes people we like just don't measure up as much as we hope they will. It's a shame but it's not worth bothering about them.

  • I really understand how you feel postle because my s-i-l is just the same. I'm convinced she thinks I'm putting it on when in fact I may be having a better day or just getting on with things but she thinks I'm getting better which I take to think she condiders she's been right all along & it's just "growing older" problems. I've given up trying to explain but I don't think it helps that her stepdaughter had JIA & fortunately hasn't developed full blown RD so she doesn't or rather won't understand the complexities we all face. She moans about aches & pains & we are expected to listen & be sympathetic but I peevishly wish it was RD she was experiencing, just for a week, & see if it altered her views, is that really wrong of me? It's not me at all but she's made me feel that way with her nasty, even snide comments. As you say it's not worth bothering with them but we all have to rub along don't we?! ;)

  • Hello

    Personally all you can do is just let it go. Now I have had my problem now for near on 40 years and it is disconcerting how many associates and friends do not understand my condition and how it started. Sad to say I lost my Job about twenty six years ago and they just carry on and now say nothing. I now prefer that and sad to say I never broach the subject and I am just left to paddle my own canoe. This stops any upset and I am left to get on with it. People know when I am bad and thats it. You have this site that will give you support I am very insular as I suffer the Reactive Depression associated with a chronic condition

    I visit several sites on here and do Voluntary work for several NHS Organisations that helps me maintain and understand my condition. Now I find for me it is and has been the best way forward

    Good Luck

    BOB

  • I've just been out at a party tonight - all women of a similar age to myself - most of whom know I have RA - one a GP friend. I was dreading it but what I learned is that one old friend with unspecified arthritis is to have a lip biopsy for Sjogrens next week and has the same neuropathic pains as I have. Another has had two detached retinas and a cataract at a relatively young age and was blind for a while - living on her own in the country. Three including the GP have such bad night sweats that one of them actually rotted her duvet cover and they all have terrible sleep patterns as a result.

    I came away thinking I wasn't that unusual at all. I don't think anyone should minimise another's suffering but I think sometimes that we think our suffering is greater when in fact it is all relative. One person's sore shoulder may stop them sleeping and cause them much misery even if it's not RA. I'm apt to forget sometimes, when ive been out of contact for a while - that I'm not the only one with ongoing health problems.

    A gripe I do have however is when friends with other conditions such as hypothyroidism (which I also have) try to find quite mundane reasons why I have been diagnosed with RA or am so unwell sometimes - saying that it's probably just undermedicated thyroid and I need to take control of my own health and self medicate and ignore doctors - they are mostly fools. These people are the worst for me because they make assumptions that my lifestyle must be to blame for my symptoms and that everything will Improve if I do as they do and self medicate via stuff you can buy online such as B12 injections and extra vitamin D and natural dedicated thyroxine. Sorry for the rant but this drives me nuts!

  • I don't mention arthritis I say I have an autoimmune disease that causes destruction to my joints, causes extreme exhaustion and makes life pretty difficult. I simplify it down for them. If you mention the A word they go off on some rant about their grandmothers'/mothers/ uncles/ sisters etc etc

  • GOOD THINKING ! :) It GRATES my NERVES To the CORE when I say I have R.A. and someone says, Oh, I HAVE THAT TOO!! (have about 3 I can think of right off hand..) and Funny, when I ask what treatment they are on, the answer is "Oh, None". ?!!? I think NONE !??! So, No Humira, Enbrel, No biologics, NOT EVEN METHOTREXATE !?!?? So, your doc knows you have an autoimmune chronic illness but NOT ONE TREATMENT ?!?..NONE what so ever ?? I CALL Bull-Crap!! LMAO.. makes me wonder how they even get throughout an entire day without killing themselves from pure stupidity in their thoughts and /or actions!

  • Yep, so if you say autoimmune disease they have no idea what you are talking about so don't make the leap to their aunties arthritis. It has worked so far. I just never mention the A word.

  • I've had similar positive results since saying RD, I think it's "Disease" that stops them in their tracks & actually ask instead of being dismissive. I have been asked "so what is RD then?" & answered along the lines of "autoimmunity, inflammation causing antibodies making my body attack itself". That usually leads to wanting to know more about it & more often than not a "sorry I had no idea, I thought it was just arthritis".

  • So true. In fact a woman at work last week asked me why I use a walking stick and so I told her, apart from the fractured heel of course. hahaha I think it is the misunderstanding of the difference between OA & RA/RD. It needs renaming.

  • oh my....just arthritis...

  • I have RA or at least, I was TOLD I have RA by my local NHS rheumatology department who prescribed methotrexate. Pain was bad, GP prescribed Oxycontin(!) but I didn't want to take that so put up with it until I saw the Queen's physician, no less, in London. Needless to say, I was virtually pain-free by then (it was the summer, I put it down to the weather) & he doubted the diagnosis!!! I didn't want to take methotrexate & as I was so well, I stopped all medication & just took cod liver oil. Now, with the onset of winter, I find my symptoms returning, slowly but surely. I am one of those people who is cautious about taking ANYTHING suggested by our (wonderful?!!) NHS without having to so can empathise with those who think like me.

  • lol ThomasFPJ your post made me chuckle, its spot on!

  • Thank YOU !! NOTHING makes me happier than putting a smile on people's face!! We have to tolerate and learn to cope with this, might as well smile whenever possible !!! I am happy to have this site and such a WONDERFUL group of people to talk with and relate to and share experiences, because it does HELP SO MUCH !! I hope you have a GREAT WEEK !! Much Compassion and LOVE ! >.Tommy

  • With you there !!!

  • Where did u bury the body? ???

    Been there . I now have friends I tell how I am and friends I don't. .

    Best quote ever is

    A real friend asks you how u are

    And waits for the answer

    Xxx

  • LMAO!!! Thank you for the laugh! :D .... NOW when people try to ASSURE me they have R.A. and NO treatment, I counter , with " Well.. I have Ebola now too.. yeah.. they sent me home with some antibiotics, I should be FINE in a week or two!" :) XOOX Tommy

  • Lovely and reassuring answers. I agree that saying that I have rheumatoid disease usually stops some conversation.

  • Hello there, I'm horrified to read how ignoant and cruel people can be! I'm very lucky that my friends and family understood straight away that RA is a serious and chronic condition. It 'helped' that a family friend has had it for about 30 years so they knew what it is and how it affects people.

    What I have experienced though is people making assumptions about why I've got RA and telling me what I am doing wong with my treatment. It's usually the 'alternative medicine'/'diet guru' sort of people who do that. There is a lady at work who tells me I am 'suppressing symptoms' and that biologics are horrible drugs and that I should get off all medication and/or live off broccoli. It used to make me extremely angry but now I just tell her (and people like her) that I'm very happy with my treatment and I won't stop something that obviously gets great results. If they persist, I ask them if they'd prefer that I get joint damage and a life of pain and misery. That usually shuts them up.

    I'm sorry you have to put up with these people on top of RA. My advice is to ignore them and try and be glad for them that they have no idea how bad RA really is.

    Love,

    Christine xx

  • I have a work colleague who says I'm lucky I don't have osteo arthritis as I can at least have treatment! She has just had an op on her hands and needs nothing further. If only everything were that simple! I have sisters with oa and another like me has rd. Family seem to understand my fatigue, which is by far my worst symptom, but I don't talk about it with anyone else. I too use the rd rather than ra if it comes up in conversation. Some people just think they know better and you have to let it go to keep your sanity!

  • I agree on TWO of your opinions, that with some People YOU HAVE TO LET IT GO!! AMEN, !!!! and the other being the fatigue, being the worst!! its the ABSOLUTE WORST , Totally agree on that.. some days Its as if I have the worst flu of my life and getting out of bed itself drains me!! Thank you for being here and sharing !! Much COMPASSION and LOVE ! .. Tommy

  • Can I join you all? Most 'friends' (not the really close ones) ALL say they know someone with RA AND "they're much worse than you". When inquiring what treatment they're on, they are never on anything. I've stopped mentioning it now, it's not worth it.

  • YES SALLY!! :D Its mind boggling and you feel as though its almost an insult ! I feel your pain but know that ALL the Rest of US are HERE! We KNOW and UNDERSTAND!! The disease hurts, its depressing, VERY DRAINING with the fatigue and at times the medications seems to make a million times worse ! Keep your head up and Stay Positive ! :) Much Compassion and LOVE to YOU ! ... Tommy

  • Hi All

    In my experience, those who complain about every little ache or have also had or have whatever anyone else have actually little to grumble about. It's those who have truly suffered who just soldier on and smile the most.

    It's just not worth wasting your time and energy explaining to these group of people. They just want/need to be the centre of attraction and don't want to understand.

    Have faith in yourself, your true friends and your support network.

    Much love x

  • my daughter says I am making my self a victim ,and I am not that old but my son is very supportive and understands my struggle .unfortunately it has split the family in two .the lack of concern is not unusual .its the same for people that are depressed they are told to get on with it ,I don't want sympathy ,and I am not the sort of person to give in without a fight , but even the atos for pip don't take you seriously what hope have we sorry that has turned into a moan.

  • Junebee, that breaks my heart to think your daughter sees you in the "victim" light... as previous members wrote, you wouldn't wish it on an enemy and GOD FORBID she were to have it, or ANY other person who tries to downplay the symptoms or suffering, I hope they NEVER have to experience it !! You are LOVED and UNDERSTOOD here ! Much Compassion and LOVE ! ..Tommy

  • thank you for your kind words they brought a tear to my eyes

  • my daughter says I am making my self a victim ,and I am not that old but my son is very supportive and understands my struggle .unfortunately it has split the family in two .the lack of concern is not unusual .its the same for people that are depressed they are told to get on with it ,I don't want sympathy ,and I am not the sort of person to give in without a fight , but even the atos for pip don't take you seriously what hope have we sorry that has turned into a moan.

  • Sounds familiar. With me its the people who tell me about their problems with a "bad back" and how it took weeks to get better. " I'm not going to get better" I want to growl. Then there are the suggestions about swimming and masage. As if I hadn't tried everything already. I get the impression from some that if only I'd get it together to take enough painkillers (the constipation issue is not relevant !) Then I'd be able to carry on normal life.

    And of course the stories about people with pain much much worse than mine !!!!

    I now just say my spine is slowly crumbling , which is enough.

    I do sympathise with those who try to suggest things though

  • I, like lots of people who have RA constantly seem to have to validate my condition. When I'm not too well they can give me some, what I can only describe as begrudging , sympathy. If I'm appearing well then they seem to think I've recovered or it's gone ! They ask questions then like " why are you still taking medications ? " They tell me that I'd be better off to stop taking meds if I'm ok now ?? I'm in my early 60's and also find others in my age group or older think it's the same as OA (which I'm also developing) & say things others have already mentioned..... I have that... have you tried eating/drinking etc. I'm a member of NRAS (National Rheumatoid Arthritis Society) and now have a stack of their publications on a range of topics. Depending on the person and what they say, I now give them a publication that will help answer their questions. Works really well..... a lot less negative impressions of RA and more understanding and empathy. I'd advise trying this. Good luck.

  • Hi, I tell very few people, including family. I've found that people don't really understand. It's a shame as I could do with some support. Only the other day, I was out with a friend who knows I have RD. We went to the royal Albert Hall,which was lovely, but she marched me up & down escalators which we went at a great pace, then she chose a high seat up at a bar to eat

  • Oops for some reason my post was cut in half.

    Anyway I won't repeat, let's just say it turns out that she has a bit of RD in her knee & a finger!! People just don't get it.

  • Just love this website.....It's so real...I can so identify with everyone...Thank you all for lightening up my day xx

  • My rheumy says he always just calls it "Arthritis" to people in key positions to effect change however a professor of connective tissue diseases I saw called it "Rheumatoid" when speaking to me and in his letter to my GP. I know which of these I preferred!

    So I call mine Rheumatoid or tell people I have an autoimmune syndrome now if I speak about it at all. But then mine is so deviant that I don't think it's one disease anyway so I don't bother adding disease in at all - this word just depresses me more I'm afraid!

  • My partner has been my best advertisement for my RD. I find when we go out that people know what we have to go through. He is very clear about our meds and how serious these drugs are. He tells people how he admires how I cope with this disease, he also says he wouldn't want what I have. I have put weight on MASSIVELY lol but he just says don't worry you will lose it. And when you get the idiot who says ahhhhh then squeezes your hands or slaps you on the shoulder he does a fantastic Growl. And don't you get them, my hands had swollen up like balloons once and very " well meaning " person then started poking the swelling on my hands. Fortunately my right leg was pain free on that particular day, but it went into spasm and accidently kicked him. lol

    Shazbat

  • Is the friend still alive ??? She wouldn't be if it was me :-)

  • I have tried all sorts of responses over the years. Depends on my mood and pain levels.

    If I feel rubbish I smile and say very little.

    If I feel ok I tell them I am on Chemotherapy for my autoimmune disease. If they persist I say that its very complicated and affects most of my body. That's quite an effective reply.

    When I was advised to use Homeopathy (bah humbug Grrr) I replied:"Oh, yes. I have heard about that. It is has been scientifically proved to be just as effective as a Placebo."

    Well, I have to have some fun sometimes!

  • I too have this problem! I have fibromyalgia and RA.. But with my mum of all people!! She refuses to see that anything is wrong with me and tells me that I'm nothing but a problem to her! I can totally sympathise with how awful it is for people to just brush off our chronic disease as if it's just a cold!! I also have problems with some friends constantly trying to 'compete' with me... Ie they're always in more pain than me with their headache/sore toe!! I find it really difficult to keep my mouth shut and my head up when being treated like this! I'm so glad I have all of you to speak to, you're the only people that really understand what it's like!

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