I have been reluctant to tell my friends what is happening to me, getting RA, because the answer I usually get is: "Oh I've got RA too. My fingers hurt a bit sometimes." When I try and explain that what I'm feeling is a hell of a lot different to a few swollen joints, every now and again, they look like they don't believe me. It's not a bloody competition. It's not that I feel worse than someone else, just a bit of understanding goes a long way. And my friends don't seem to think it's a big deal. So I end up not telling them.
I'm so glad I found this place and feel secure that people understand what I mean about fatigue and exhaustion and depression and everything else that goes along with it.
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Jules13
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Ask them are they sero-positive orsero-negative? How often do they have their blood tests . What about biological treatments? Those questions will baffle them. Ask them how sick it has made them, because as we all know RA is not just a disease of joints! I don't think that there is a quick answer to this, not if one wants to be polite!
Of course not. They haven't had blood tests or know what I'm talking about because they google their symptoms and it says RA. I'm so sick of it. Same thing happened when I went through early menopause. My friends said, "Oh I'm going through early menopause too!" No you bloody well aren't you idiot because you wouldn't be able to function!
One friend even sent me photo of her slightly swollen finger joint, saying; "see!" Yes I know your finger is a bit swollen but is your body riddled with it, are you aching all over, do you feel like you have flu???? Arghhhhhhh.
I know how you feel excuse the mistakes. My right hand and fingers are useless for for small writing so I left fingers hav to most of the work. Y es pain is very sore I have friends like that too it's not only the The finger joint being out of place it's the pain in all joints and Ben getting up from a chair. Ofcourse I think the part of the country I live in is not good for me too much rain living in the west side of the country this year been terrible I'm in limbo just now I had. Been on Methotrexate for almost 3 years then I was put on the tablet form now I am off the too nothing agrees with my innume system my blood and kidneys are affected. The RhuemDr has advise me to increase my hydroxychloroquine tablets from 1-2 a day. Fortunately I have lidocaine patches I feel they take the edge of the pain away but you need you use them regular. It's a pity they cannot find a cure for it or something that could prevent us taking it in the first place. It's not an old persons desease now many young people have it
Hiya chuck, know exactly what you mean, lol, its a pain in the ass, I always say, oh good for you, I've noticed your finger being bent, are they not very painful, lol. They don't seem to moanor say. Oh I've got that syndrome.
People must have some sort of jealously with them lol.
When I say I have dementia and they say I must have that, I then say REALLY how does it effect you? Then they mumble and then I go to town on them because I hate it. They are not real people.
My God people are rude. Why can't people just say, "Gosh I'm so sorry you're going through that." Why? If my friends have something wrong with them I listen and sympathise and try and find out more about it. My friends suck! Well, some of them. The narcissistic idiot ones!
I have RA (sero-positive) and fibromyalgia and a new friend of mine has Celiac and UC. We were texting a check in the other night and started to talk about our respective illnesses. As the conversation ended she thanked me for talking to her and listening to her talk about her issues and medication woes! My response lol screw those normal people with their good health and lack of pain! Who ever said normal had a finite definition! To me, I am normal and they are odd!
Unfortunately, chronic disease forces you to weed out friends that are false and toxic!
It could be that they are trying to empathise with you. I told a work colleague about my diagnosis, something I would normally never do and it turns out she has RA. She's further down the line treatment wise, she's on biologics and she understands exactly how I feel, the aches, pains, exhaustion, all of it. It felt great to talk to someone who is on the same wavelength. If they are your true friends give them a chance and if they care for you they will listen. I have had to learn this the hard way. Not everyone out there is uninterested and selfish.
That's exactly my point Nicole. My God, if I had a friend that was feeling what I was feeling then it would be amazing. Someone that gets it. Someone to share, moan and groan.
But I'm talking about friends that have never been to the doctor, and just assume they have RA because of a slightly swollen knuckle. And then argue every single point you raise and even when you ask them about blood tests, they say, "I know I've got RA, I googled it!" Jeez.
I completely understand how you feel! I am recently diagnosed - it's affected my fingers and toes and my ankle badly. When my husband told my mother-in-law she replied - "Oh yes - I've had a touch of RA on and off for years"! Huh? "A touch of RA".... what the heck? Yea - her fingers have gotten stiff every now and then over the years! I feel like this just diminishes the pain that we live in every day with our chronic illness that can only be controlled - not cured. Like someone said - it's not a competition. But those that don't have this don't understand.
Exactly. The amount of people that tell me their mother or granny or elderly neighbour have RA, and I say, "Oh it's terrible isn't it. When did they get diagnosed?" And they say, "Oh I don't think they're on medication for it, they just get twinges every now and again." Twinges!!!!! I'm 49. To get twinges in my 80's would be heavenly.
It is completely insulting to me that friends can't see the bigger picture. It's almost like they don't believe me. That I'm taking a sickie just because I'm lazy and my hands hurt a bit. Grrrrr.
Well Jules I'm well over 80. 86 to be precise. I've had Arthritis for many years through knocks hill walking in teenage days it's only middle age that they creep up on you By then you are riddled with pain Painkillers were a good medication the Dr gave you certainly not enough to help get you up and running again. Everything comes with a price it either cures you or kills you You have to learn to live with it the days you are tired that's a rest day do nothing Read a book watch the Tele The next day could be a good Don't over tax yourself If the weather is nice go away out have a wee walk about looking into shops even go in for a coffee We all need some fresh air Make the most of your day don't over tired
I wish it was that simple. Trouble is I can't not work. I can decide to take a day off. I'm a self employed graphic designer. I don't work I don't get paid. Can't survive on less than 3 days a week. Currently haven't worked for 3 weeks and haven't a clue how I scan survive. The stress of being ill is terrible.
I have only told 2 good friends and family, everone else just think i have 'a bad back' . I find it difficult to talk to people about , when i was going through the process of being diagnosed i had to have lymph node biopsys and i ended up in tears when my sister in law asked how i was . I still shiver when i think about it so i dont want to go through that again ! Some people have never experienced pain or the terrible exhaustion so how can they understand , they just think its like having a twinge in their knee ( my sister is a good example as she equates a twinge to what we experience ☹️ ). It is upsetting at the time but i have given up dwelling on it for too long , we just need to give them a fools pardon . It is a blessing to have this site to lean on and get support 🌸🌸🌸🌸
Its harder when you have to cancel stuff though. I say I'm exhausted and can't make things, and I know they think... how can she be exhausted, she just goes to work and then comes home. Whereas they are all mothers with kids and always compare their exhaustion to mine. Completely different!
Well Julia not everyone thinks like that you may be surprised You should tell people your hands are painful and the drugs you are on are leaving you extremely tired You also need to get a social worker enquire at your Dr Surgery Is there a citizen advice bureau make an appointment to discuss your situation if you cannot work you need to get assistance this would be one less worry for you until you can get back to your work
I don't bother. Only three people have ever shown any real interest and it's really too much of an effort to educate the general population. I recently heard of a friend's husband saying that he had "diabetes in my toe". What can I say?
"Oh, I thought I had diabetes in my toe but it turned out to be Ebola? Who knew it was endemic in West Acton. Could be worse tho', the man next door says he's coming down with Yersinia pestis. Well, it was that or West Nile Disease - whichever one affects your elbow or makes you talk out of your backside more."
hahaaaaa. I almost told my friend that she simply had witches fingers, rather than argue with her when she told me she had chronic RA in her hands. She hasn't.
As you say - most people are not interested so why bother. What does get up my nose is those very people will yap away for ages moaning about their bad toenail or poxy little cold sore.
Oh thank you so much. I really needed a giggle today. Your man next door must be related to some of those around here who reckon they might have acidophilus. If they have it will be the nearest thing to live culture
I have a friend with RA who reacted extremely well to first medication. She has no problems, fortunatel for her. She is the least sympathetic person. Often dismisses my complaints. I've stopped bothering!
It was a bit weird really. I came down with PsA a few years after her, and she kept down playing my symptoms.
Like Netta, I have PsA. I was diagnosed in my early 30s, but had issues from my teens. I've had a few major flare ups in my time, and then periods where things settled. I'm in my early 50s now and life is a struggle.
I have an elderly relative who told me to push on my finger joints to cure it. She said that is how Chinese people deal with arthritis. When her finger joint played up, she applied a lot of pressure and it was cured. She's not had an issue since. Well, that is because she doesn't have arthritis of any type. If she did, it's to be expected when she's pushing 80.
It's not as though my PsA is only in my finger joints, my whole body is in pain.
I've lost my career through the pain, depression, anxiety and chronic fatigue associated with PsA. People don't understand. I'm not lazy, far from it. I've spent 2 years in full -time further education, and 4 years in full-time higher education. I feel like I've lost myself, and am having to mourn the loss of that person, and try to find a new purpose for my life.
I was reduced to selling items on eBay for a number of years. However, for the last 12 months, I haven't even been well enough to do that.
I have other conditions that prevent me from mobilising safely. There are times when I am unable to drive. I feel socially isolated and judged for no longer being in employment.
I also beat myself up for having to cancel social/family events at short notice.
I spend so much time having to bite my tongue with people's stupid comments. I have problems moving my eyes as it becomes painful and causes vertigo ... just as well really, as I would spend much of my life rolling my eyes and offending people.
For years I believed the myth about disabled people being grumpy. We aren't grumpy, we are just fed up with listening to stupid comments from the mouths of able bodied people.
Oh you poor poor thing. And I mean that, not in a condescending, pat you on the head kind of way, but in a really seriously that sounds just horrific kind of way. You have every symptom and side effect that people talk about all rolled into one and I can't believe you can even hold it together to write it down. I wish I could hug you but that might hurt too much.
Bless you, thanks. I'm in a mess, but know that things could be a lot worse. I try to count my blessings - I have a lovely husband, children and grandchildren.
I only want you to know that what you are feeling is natural. You aren't alone. We either share your feelings or remember what it feels like to be newly diagnosed.
As for the stupid comments, you just have to shrug your shoulders or roll your eyes ... if it's not too painful! Don't waste your breath trying to explain anything to ignorant people.
I think that the advice about saying you have an AI disorder is great. I have picked up that useful tip from this thread today.
Hug gratefully received, and I'm sending one by return!
I think you have to just not get upset by it. People are just people, and often don't understand illness, unless it directly effects them (excluding my friend of course!). Mostly folks just lead busy lives, and can only deal with their own stuff.
If people ask me about my illness I just tell them it's an autoimmune disorder....friendly fire! They seem to get that.
If I were to be brutally honest, I'd have to say that whilst I'm pretty sympathetic in general to folks, I'm really not that interested in their problems. I'm too busy, and exhausted dealing with my own crap. I suspect other people feel the same way. Life can be stressful, and I guess people do the best they can.
Yes you're right but if a friend suddenly had something that impacted their life so extremely, I would want to know and to understand. The two I'm talking about are my oldest friends. They didn't even ring me, just texted a few weeks ago, "poor you". I'm really hurt.
I have a brother inlaw who looks everything up.has everything someone else has . A recent conversation with him started with him goin on about having o/a my husband was telling him how r/a effects me every day .by the time he was going he was telling us he has r/a . No meds .no blood tests no appointments .but he had it ??!!
Either people really don.t know the differents .don.t care. Or just crackers .😂🤣
Present company excepted, of course, but the more people I meet the more I love my dog. I know exactly what she needs, she loves me and (apart from the horrendous snoring) I love her. Straightforward
I presume you mean the shitzu in your profile photo, unless that is you. Or unless you are a dog that speaks and types. Ok definitely time for bed xxxx
LOL. A dog? I miss having a dog but could not manage the walks, food costs, insurance or vet bills. On my bad days, if the dog was ill, I wouldn't be able to get it to a car to the vet; and I wouldn't be able to clear up its vomit or poops.
Focus on yourself and surround yourself with caring people.
See if there are any local support groups for people with AI disorders. You'd be better off creating a new circle of friends who do understand the nature of chronic illnesses.
If there isn't a local group, could you find some local people from this site? Perhaps you could organise a local group?
You seem like a lovely lady and deserve to have a supportive and caring network of friends. xxx
Seriously You really should get a dog. They are the best therapy. They will never let you down. My dogs know when I'm feeling really bad and will come and cuddle and give kisses. They are great. I have 2 maltipoos and they have helped me get thru a lot of rough days. I'm so glad I have them !
They are. I adopted one 2.5 years ago. He was eight years old and a breeder dog. They threw him aside when his "good" years were over. It took him awhile and now he is the softest sweetest boy ever. He has really worked his way into our hearts.
Someone in the village is sort of kind and asks how I am saying I look well and am ok now.Ignores what I have to say by passing it off as because result of a bad case of flu I had years ago.Her daughter has Crones and says her daughter is alot worse than me or that she is the same.I know that disease is bad but she needs to take her blinkers off and see others aswell.
But that's why this illness is so isolating. Because people are utterly clueless about it. I didn't know myself. I thought it was just swollen fingers and a bit of pain now and again so I get why people don't know. It's not for me to educate my friends and family but I will try and get them to see the bigger picture.
I understand fully what you are saying, I've had RA for three years now and have come to believe that people just don't get it, I don't bother to talk or tell any one about it, not even at work, people just don't see you as being unwell because you dont look it, even when you feel terrible, even my own family don't get it, it's best to talk to people who understand and know what you are going through, this disease it dreadful and you don't know which way to turn, talking on here to people who use this site gives you some comfort xxxxx
Think there was a slight typo there. Detest? Haha. Yes I'm beginning to see that this community will offer a lot more help and support than anyone else. Thanks everyone. Xxx
You may need new friends. I took this kind of shit from acquaintances when I was first diagnosed until I learnt not to bother telling people but I am eternally grateful to my few(handful) close friends who were interested & supportive -- sometimes even overly so. If you care about these people I would take the time to explain how their reaction makes you feel & a bit more about the condition. They may not realise how serious it is and are just trying to empathise/cheer you up. If they react badly to being pulled up that will tell you lots about them.
BTW my friends annoy me about loads of other things😀
I remember one of my friends telling me that if I needed help or sympathy then I should go elsewhere. She admitted she wasn't a good support. I thought she was joking but after a thigh and knee replacement last year, being off work for 5 months and not hearing from her at all, I guess I should have known. Stupid me thinking people might change. A therapist told me years ago: "never expect people to change, they won't. You have to change the way you react." True that.
Get angry! I was diagnosed 18 years ago & like everyone with any RD I have just "got on with it", not really bothered to try to educate the idiots who belittle us.
To day I have had an email from a very old friend that was so patronising, I have at last blown my top & written back that I am not suffering from 'a little depression' (which she decided was my problem) but from a really debilitating RD, & that if she didn't know what that was to ' look it up' & maybe then she would understand why I was frustrated & insulted that she had diagnosed me with depression because I didn't 'jump to it' when she asked for help with something I couldn't physically manage.
I'm done with coping....in the future I'm going to tell it like it is. I will tell all who mock, it hurts, it's miserable & it mucks up your life good & proper & you are damned lucky you don't have it.
I will probably lose friends, but those that I keep will be worth having. The rest don't matter!!
I think the Arthritis part is what confuses people and they think a sore joint is all and it'll come and go with the weather. I'm now saying I'm struggling with an autoimmune rheumatoid disease....let em go Google if they're that interested and if not...bleugh! M x
I afraid when people don't understand our condition I go to great pains to explain it's an auto immune disease. They confuse it all of the time with osteo arthritis. I have to tell them as my suffering doesn't compare to there achy joints. Lol. X
Hi all I work in the pharma industry and my colleagues including HR still don't get it they are supportive but still don't understand that RA is different. If people who work in such industries don't get it how are ordinary lay people to understand. I think general public awareness needs to be raised. I told one really good friend and she responded by saying 'oh a friend of mine has had it years and they are fine'. People just don't understand. They think if you look well you are fine and as for saying it's autoimmune they say so is an under-active thyroid. I was in my Dr surgery today I saw all kinds of literature but NOTHING for RA it's wrong. Paulajolo is right they confuse it with osteoarthritis.
Sounds like kind of remarks I get! If you say to a friend/family member you're in pain with RA the usual answer is that they have arthritis as do most people of "our" age! Never get any sympathy!! They don't understand the flare ups, being careful about not getting infections, the medications or the fatigue!! So I don't say anything now! Thank heavens for this website, sanity!!
Do not stress yourself about what people think! If they really have RA, you could have a great relationship! If you doubt that they understand RA, explain that rheumatoid is an autoimmune disease unlike Osteoarthritis which is a degenerative disease! If they do it understand the difference then they do not! Ask them to google the difference? You cannot hide from your disease! And, you need people around you who understand this! when, I was first diagnosed, I had the same problem within my family, then after I tried to explain the difference to my my, she got it! She told my brother that what I had was something else! He then asked me what she meant. When I told him, he searched the difference and spread the word to other family members and friends! Never be afraid to ask people to listen to you.
I completely understand my friends were like that too until I had to have surgeries and my hands and feet became disfigured. I educate and hope it gets crossed. I hope all is well with you I'm glad you found a place that you feel you don't have to hide it. ❤
God reading the comments left has cheered me up no end. I think some people think rheumatism is the same as Rheumatoid Arthritis. I have sympathy with everybody with RA. I was diagnosed with it 2004 having first being diagnosed with graves disease and b12 problems. All Autoimmune problems. I was allergic to the medications so specialist says can't do anything. I'm going to see another specialist next month but I don't know what will happen because I don't think I have it and think my problems are Hypothyriod and osteoporosis. Even though all my symptoms are similar and the specialist said without meds I'd be in a wheel chair by know. Thank God that hasn't happen. Sorry to waffle on but felt able to say on here can't tell my sister cause she as everything 100 times worse.
Hi jules13 I know exactly how you are feeling I have RA and believe me it isn't pleasant. The pain of it is awful. I've been very sick with the pain and fatigued and exhausted. Some people do not understand what we go through on a day to day basis. It can affect every part of your body I would not wish it on anyone. Talking about it to people that have the same problem can help because they know exactly what ure going through. But as always we have to put a brave face on and sometimes smile through the pain. So don't worry you are not alone and I hope you can get some ease. This is zeus49. Take care lots of hugs.
I totally understand where your coming from as I get the same comments, people don't have a clue. It makes me really cross. I also get you are looking really well, so does that mean because I try to look after myself I'm ok. They don't have a clue what we are going through or the dangerous side effects of our drugs. They think they are hard done to if they have to take a painkiller for their sore finger.
I feel like drawing bags under my eyes and talcum powder on my face so I look ill enough for them. The steroids made me have ruddy cheeks too, like I'd gone for a brisk hike!!!
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So discouraged. I know it will pass, but....feeling the need to vent a little.
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