Other People's reaction to the diagnosis of RA - NRAS

NRAS

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Other People's reaction to the diagnosis of RA

Mr_Judge_Benny_Hinn profile image
Mr_Judge_Benny_Hinn

Have your friends shunned you etc?... Has your partner/spouse/pet sheep reacted badly to the news? If you're diagnosed with RA at a young age, people's perception is that only 'the old' get arthritis! most short circuit at the news!

55 Replies

Firstly, can I say you have put up a couple of very interesting posts recently. Thanks for that 😊

My partner and 3 children have been great.

My mother less so, but does not understand what is going on. She tries her best.

Most friends have been supportive to a degree, but my relationship with all of them has changed, we were all outdoorsy, active sorts, I can't do any of it anymore, so I'm not included in much of what goes on.

I rarely join in evening social events with the above friends as I'm fatigued, don't drink alcohol anymore, can't cope with busy, crowded places and have not participated in the past 2 years outings, weekend walking trips and so have little to contribute to conversations.

I used to belong to a Scottish country dance club, can't do that either, have lost contact with all but one, who I see occasionly.

I have a long standing 'fairweather friend', I accept her. She has all but disappeared, then pops up when now and again.

But, I am at a loss as to why a very good friend of over 20 years has almost 'abandoned' me. She doesn't answer texts, emails , always has excuses not to meet when she does eventually respond, then keeps the meet up short. Very upsetting, I spent a lot of my life with her.

But, I value those who do support me and know who my real friends are now. One acquaintance has now become a very good friend.

Lyneal profile image
Lyneal in reply to Mmrr

Think people do not understand RA, wish it was called something else, people assume you just have arthritis wear & tear short. I have been lucky with friends they are all great ,family also. It is a complete bummer of a disease. So good luck with it all and hope your good friends are supportive.

Caza profile image
Caza in reply to Mmrr

Have you had it out with your friend? I think I would have to even if it meant being the end of the ‘friendship’.

After a very traumatic & tragic event in my family a neighbour shunned me. I confronted her, she was terribly upset & just didn’t know what to say to me. It didn’t make it right but I understood. I’d wrongly thought she was judging me. At least you’d know why, just a thought.

Mmrr profile image
Mmrr in reply to Caza

I haven't, 2 years have now passed, I would find it difficult to pursue meeting up to ask her.

daisychains58 profile image
daisychains58 in reply to Mmrr

It is a horrid disease Mmrr, think I’m still in denial or holding judgement until my ankle replacement end of April. My mother however suffered terribly at the hands of RA for years so I fully understand all of the variable symptoms and associated pain and I still remember the loss of friends popping in to visit her. God bless her 💝 she suffered for years and even alone for 7 after dad died which amazed me. She was one tough woman, on the inside anyway and seldom complained. We helped her stay in her own home until the end, so glad of that. 🤗🤗

Hidden profile image
Hidden

Do you know what, even after nearly 30 years some of my friends and family still don’t understand this disease I have and question why I can’t do something or expect me to partake in activities that they should by now know I can’t do. My husband and daughter have been great but I have lost contact with a lot of friends as at times I haven’t got the energy to even think about meeting up let alone doing it. I know it’s partly my fault as I try to carry on as usual and not moan to others so they probably don’t know the real extent of what’s been happening to me but even so.......

Sorry, this is turning into a rant but you probably get my drift ‘sigh’

Oh and my pets love it as I am home a lot so they get lots of attention 😊

Mmrr profile image
Mmrr in reply to Hidden

Its not a rant I get it.

My mother still ask ridiculous things of me, can I hang pictures on the wall for her, whilst handing me a hammer and hooks. My wrists and thumbs are in supports and I'm awaiting plastic surgery!

Hidden profile image
Hidden in reply to Mmrr

Glad it’s not just my friends and family 😊 they either expect too much or treat me like I am unable to do anything at all. I’m awaiting hand surgery too but am in two minds whether to go ahead.

Mmrr profile image
Mmrr in reply to Hidden

Plastic surgeon won't operate whilst I am on steroids, but I'm not absolutley sure if i want to go through with it. Big decision.

Ruth12345 profile image
Ruth12345 in reply to Mmrr

Ive decided im not having an elbow replacement.

Hidden profile image
Hidden in reply to Mmrr

It is such a big decision, I’m facing 3 months recovery and being unable to use my hand for alot of that time. I only have a couple of weeks to decide whether to go ahead or I’ll be removed from the hospital list. I’ve already cancelled one operation date.

Mmrr profile image
Mmrr in reply to Hidden

Yes, no driving, meaning I'll be housebound or relying on someone driving me. And no spa, I go twice a week. A bug decision , how much function do you have ?

Hidden profile image
Hidden in reply to Mmrr

I’ve lost movement in my thumb and two fingers due to tendons snapping, op is for the two fingers to have tendon grafts from my wrists. I’d forgotten about no driving 😩

How about you?

Mmrr profile image
Mmrr in reply to Hidden

Trapeziectomy with ligament reconstruction and tendon intersupision. a few months in a plaster cast, then rehab, could take 6 months for full recovery. Or I just keep wearing my splint.

Any way not for now as I'm on steroids.

Hidden profile image
Hidden in reply to Mmrr

I had to look all those up 😊 yours is a long recovery,. Such decisions ...

daisychains58 profile image
daisychains58 in reply to Mmrr

I was on prednisone and surgeon still operated and I’m still on low dose and surgeon not worried re upcoming surgery. Just needed to stop any other meds NSAID or DMARDS a week beforehand.

It’s a big decision having surgery Mmrr but you have to feel good about it or it’s a definite no no, gotta listen to your instincts too. sort of wish I’d only had one knee done, I reckon the other would have lasted a few years longer and the pains not much different. I deferred that once as well cos I was feeling so unwell and did want to go into surgery feeling like that.

Mmrr profile image
Mmrr in reply to daisychains58

It's interesting the differences in surgeons. No steroids but I can continue on MTX. Anyway it's not the right time just now, I'm just about to start biologics and not too great at the moment.

Retired16 profile image
Retired16 in reply to Hidden

I’ve given family and close friends info on RA and that helps their understanding. The response, “Oh, I have arthritis,too,” is one that I usually just ignore. Inform those who are open to information.

Hidden profile image
Hidden

I don't have RA, but I do have OA & yes friends have deserted & no longer respond to messages, yet friends I used to work with, post photos of them all together on nights out, onto social media, obviously I never get invited too.

It used to nark me so much, now I don't even bat and eyelid or respond.

You eventually know who your friends are, I can count mine on one hand.

As for my family, they're always there.

Mmrr profile image
Mmrr in reply to Hidden

It is sad, but you move on. Loosing my 'very close friend ' of 20 years still gets to me at times. Too busy to answer a text, but yes the Facebook page is always updated.

Hidden profile image
Hidden in reply to Hidden

Even if you felt you couldn’t go it would be nice to be asked would t it? My mother in law took the whole family on holiday except us, she didn’t even ask us and when challenged said oh I thought it’d be too far for you to travel. Hadn’t occurred to her we could stop off for breaks and it was only to the Isle of Wight!! She just made the decision for me. Grrr.

daisychains58 profile image
daisychains58 in reply to Hidden

That’s really sad, I’d be hurt by that one 🤗

Oh wow.

This is something I had not even thought of/worried about as yet. :S

allanah profile image
allanah in reply to Ginge_31

Dont worry ginge. Yours may be true friends xxx you do find out I'm afraid when you have to cancel it ask for a bit of help xxx

I was middle aged, 42 when diagnosed, and felt I was in my prime of life! I loved my job,had great energy, and had fantastic work mates, but when I had to leave work due to my RD they never even visited. The end of an era! 😔 😔

Life goes on and you adjust to this new you, but I still find it can be a lonely road as lots of people just shrug their shoulders when you tell them you have this rotten disease and follow up with “ well you look really well “ grrrrr! 😤😤They only see me out when I’m well but they just don’t get it!!! 😡

Thank god for partners and family who see you at your worst and know exactly what your going through, not forgetting the fantastic people on this forum 🥰🥰🥰 for all the great support you give 👏🏻👏🏻👏🏻🤗 X

Ra has had the most unexpected outcome for me in this regard. At a time when I thought my friends would band around me in support, I have discovered the opposite to be true. My husband and daughter are my biggest supporters and even come to my defence when others don’t understand. But sadly, friends, even my closest friends I have known my whole life have vanished from my life. No one seems to understand and no longer remain in touch. But I’m trying to remain positive. Ra has changed me too I guess. I am not the same person so I am choosing new friends for myself, people who don’t judge and who are not quick to tell me their opinions but people who love me and see past my health and who want to stand by me. ☺️

Mmrr profile image
Mmrr in reply to Rheumagal

It seems several if us have had a similar experience with friends disappearing. At least I know it is just not me which gives a wee bit comfort.

Hidden profile image
Hidden in reply to Mmrr

It’s not us it’s them 😊

I completly get it. My experience is a mix of all the above. Interesting, sad, not how I expected my older years to be like. Im 61 and feel ive been catapolted 10yrs. However, I will say I have experienced things within friendship that shows the human race at its most best. I now choose to mix with those.

Interesting topic.

Mmrr profile image
Mmrr in reply to Ruth12345

A very interesting topic. It is good to share.

Agree with everything everyone said. Lost pretend friends but the ones I have are real x

AgedCrone profile image
AgedCrone in reply to allanah

I found the most unlikely friends were the ones who understood. The one or two who I thought would rally round ran for the hills.

Such an interesting thread.

Most of my friends have been supportive but then you can’t be totally honest when folk ask how you are as their eyes glaze over when you tell them the truth.

I have a friend who has RA and she totally gets it, which is helpful. But I remember before I was diagnosed and she would be in pain and I used to think ‘it can’t be that bad?’. Of course now I know exactky how bad it was and I’m ashamed but I also realise that this is how most folk feel.

Pain is so draining and ever present and preoccupying, but so hard to understand if you’re not suffering from it ☹️

Such true words 🤗

RAGurl1 profile image
RAGurl1 in reply to Sjhoney

Hi sjhoney… Just been lurking around here, and I saw your note about the pain. I have a combination of about 9 AI conditions, and if the conditions weren't enough, I have finally realized that several of the medications for those conditions also cause much pain. I try not to take any more for it than I have to, but it is frustrating how much, how long, how strong the pain can be. Just struck a note with me..

I found out who my friends were, yes.

That’s such a shame that the common theme here is that friends have been lost. Luckily, I can’t say the same. My friends are amazing. When we go out, they always make sure that it’s downstairs, not upstairs. Theatre tickets and plane seats, they always get me an aisle seat without me saying anything. We all work in healthcare, so maybe that’s part of the reason. I also try not to moan and groan as I realise that can be draining on everyone. Thankfully, I’m also improving with Benepali and was told yesterday that my inflammation marker has reduced to 11 from 82! Life is definitely easier,

Wow that’s a great result with the inflammation, hope you keep feeling better and life continues to improve and be happy for you.

This is the first time that I have posted on this forum,but I felt I had to comment on the post .I to have had a life long friend disappear and that has been quite difficult for me.Close family have been truly supportive.When you are diagnosed with RA you just don't realise how your life will change.

Hidden profile image
Hidden in reply to Pinkdance

A friend i've known for over 30yrs very rarely responds to messages. I had my 50th birthday last year, invited her & her family for the celebrations, didn't hear a word from her. Yet, she sent a message a couple of weeks ago for an invite to celebrate her 50th next month in Ibiza, I declined for various reasons (which she knows perfectly well of) & she was not best pleased.

But heyho life goes on, albeit a tadge slower.

Mmrr profile image
Mmrr in reply to Pinkdance

Same with a friend of over 20 years. I'm still tempted to contact her at times, but then pull back as she never responds.

Hidden profile image
Hidden in reply to Mmrr

Same here, thinking 'why should I bother' 😝

If I had a £1 for every time someone says that I look well, I would be very rich. I used to go to church every week, but stopped because I just couldn't bear to hear anymore of their silly remarks about how I looked well etc. They just don't get it that they only see me when I manage to get out of the house. The church is just across to road to me and I mostly struggle to get that far.

Another thing is the social side of things and I have had things said like "Why don't you come on the walk we have arranged, it is only five miles so not too far". I would have struggled with five miles before I was ill.

I too, have lost friends over being ill. One was a friend for 23 years and she moved away telling me that we would always be friends and that we would keep in touch with each other for ever. After less than two years, her emails and letters etc stopped. I sent her a special birthday card that I had made for her and didn't hear anything about it. That was in October of that year. I then sent a lovely hand made Christmas card but on Christmas eve I realised that I had not had a card from her. I became worried that she was ill so I sent her an email. I got one back telling me that that she now had new friends where she lived and that old ones had to go by the wayside. This upset me for a long time, especially as we have a mutual friend and she still keeps in touch with her and has visited her when she has come back to the district but doesn't visit me. I just can't understand people.

I remember another friend telling me that hearing about my problems was too emotionally draining for her. All I can say is that those sort of people have never been true friends in the first place.

My friends and children are very supportive.My husband just can't understand or deal withit.

That’s sad for you, the one closest to,you can’t cope with the disease. Sort of know how you must feel, my partner and adult son, who both have mental health issues struggled to cope with me when I was at my worst last year not knowing what was wrong with me and crying in pain everyday and not sleeping for weeks on end. They still don’t get on and make a decent meal or rarely anyway, so if I want to eat properly I need to cook it. Weird but he’s been caring for this sick chook for about 2 months now, cuts up her dood, hand feeding her etc etc etc, fussing like ...wow, guess I know where I stand in the pecking order sadly. Or is it his way of coping with me. I don’t know but I’m over everything atm. Sorry for the rant.

Thank you so much.This makes me feel I'm not alone.I know how you feel.It's sad.But I know every one is different.And yes I to feel that this is my husband's way of dealing with it.

I'm of the view you actually find out who your friends really are ! in my case as the RA was in remission it did'nt really affect my life at all. Now with stage 4 Kidney disease its a bit different but the real chums are those who do not judge, as in 'you look well' but offer an honest opinoun as in'your steriod chins look dreadful , but we can still go to Bluewater if your buying lunch! '!!lol

I think worst thing is false sympathy which does grate and then I'm expected to listen about their latest problem or even worse the 'oh whilst I'm on the phone can you please?' well no I can't is my reply now. On the other hand my real friends turn up clean the windows and bathroom and make me laugh. Then borrow a dress which if anything happens they'd really like to keep. Cheeky Peeps.

Hidden profile image
Hidden in reply to medway-lady

I like your friends medway-lady 😊

Mmrr profile image
Mmrr in reply to medway-lady

Yes, you find out who your true friends are indeed.

Lucky to have such wonderful friends 💖

I would like to know what your experience is.

I've had RA since the age of 5, now 48...were would you like me to start about people's reaction?

Hidden profile image
Hidden in reply to Mr_Judge_Benny_Hinn

We have loads of time to listen & read, that's what we're good at. We're always here.

Wow - I've had RA for about 9 years, and that is annoying. I can't imagine building an entire life from childhood of all things. Props to you for keeping moving..., and yeah, I have lost two friends that I was close to (I thought), when the RA started to command a position in my life.

I was diagnosed in 2015 and now live in almost complete isolation. I literally texted two of my adult children yesterday. I have not had a word since 🎄 . I asked if I had been such a bad mother ? It was like they were shocked 😳 it had not crossed their mind that it had been so long ? Really ! If one of my children had an illness I would do about anything to help. I just want to feel like I am a part of their lives. Is that asking to much ?

I am happy to announce we have several dates scheduled in the near future. I think 🤔 the problem is this hectic lifestyle we have developed. We are always racing to something. So busy “doing” we simply forget to be.

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