I know this forum is set up by Nras but we all benefit from the work done by other charities to promote greater understanding of rheumatoid arthritis.
Yesterday I shared a moving video from #versusArthritis on my facebook page. It has received 2 likes and 1 share. Compare that to a picture of my Christmas cake which got 34 likes or a photo of my dog which got 13 likes. I know likes are not important but it certainly gives food for thought 🤔
How do we make our illness visible when people prefer to look the other way?
Paula x
34 Replies
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Exactly the same with me, usually have 3 or 4 people respond to VersusArthritis, usually my sister & close friends who have arthritis. But I posted a photo on my FB on Monday which had over 55 likes.
They turn a blind eye to what they don't, or want to know.
It’s ignorance and people tend not to worry about things that don’t directly effect them.
Maybe in time the public awareness will improve but as with mental health you can’t always see RA/RD and it makes it easier for people to turn a blind eye.
Thank goodness for this forum and the many lovely, understanding people on here.
Lots of people in the same boat as yourself. It just doesn't get recognised for what it is. It cracks me up at times especially when I say ' sorry no or I cant' to an invitation or when asked to do something. The response is rarely understanding. What folks can't see doesn't exist in some minds. If you had uploaded a photo of you on crutches with a broken leg then your Facebook would be hot with ' likes' !
It's the way it is. I doubt it's going to change. Take comfort from the understanding that surrounds us on here. We don't have to explain or justify how we feel which is a great relief.
Hi, I don’t think Facebook is a good gauge, it’s all about showing a completely false, rose tinted version of your life. No one wants to see the bad stuff!
Facebook is such a phoney world. People rarely want to get engaged in detail. It's not just with invisible illnesses.
I wouldn't take it as a sign of the times. The world is a lot better than portrayed in the so-called Media!
Hi, I had a hectic day yesterday and didn't get time to reply to anyone but thanks for your thoughts. I agree it is a phoney world on fb. I usually only ever post pics of my dogs, places I visit or cakes I've baked. I never post anything about my health. This is the only place where I share health related info. Important people know the truth because they ask, in person. x
I'm sure many more FB friends had a brief look at your video than you think. I certainly do not hit the like button on things other than 'all the silly stuff'. As I am aware that Big Brother is lurking in the background despite what they say.
I am honest with myself and think that I too perhaps would not be hitting the like button if I did not have RA. I really do feel with some conditions you really need to walk in that persons shoes before you truly understand and for me RA certainly is one of those conditions.
Yes I often wonder if Big brother is listening through the Echo to my exciting conversations with my husband. Im not convinced all this technology is really progress.
Have you ever posted anything more relating to how you are?
I don't live on Facebook, and if I'm having a bad day, I certainly wouldn't be posting that.. But I have posted about my ops, ie safe and home from hospital, doing well, healing nicely etc, and Ive had lots of support from family and friends wishing me well..
So in some cases, times it is a good way to communicate..
But I do agree, that as a rule, people.. Generally, don't get this disease.. And how debilitating it can be.
I don't think I ever have posted any personal stuff about illness Jojo. I know a lot of people do but I only tell a few close friends. I'll mention to people if they ask why I'm using a stick or why I'm not going out to work. You can see that they don't understand the illness though but I remember before diagnosis neither did I. That's why I think it's good that the versusarthritis campaign is showing on primetime tv. Hopefully people will get the message that it can drastically change lives.
Same here paulywoo, I don't post a lot of RD stuff in my FB page but occasionally when I do, it gets noticed by 2 friends who are also nurses and none else seems to notice.
Mind you I mentioned to my GP several months ago that NRAS had a campaign to write to your local MP about lack of care, particularly mental health care for people with RD and that I had taken up the challenge and written to local MP.
Under a freedom of information request I obtained all my GP notes and was quite taken aback when I saw she noted this comment by me in my notes followed by lots of exclamation marks and a comment that I was unrealistic, no mention of it being a NRAS campaign.
Quite agree Mmrr, & in the past I have had to restrain myself when one more ' friend' has told me I'd be much better off if I just "stopped swallowing all those poisonous drugs." & pulled myself together. Not because they felt sorry for me, but because it upsets their plans.
Now I'm on infusions a lot are convinced I must have cancer because you don't have infusions for " something minor like arthritis " even though I have explained in very simple language that it's not only chemotherapy that is admistered by infusions.
I've given up now.......but if getting RA across to friends is so difficult, getting across to the general public is a real battle.
I'm not sure about how you can possably measure this type of thing. I'd not repost anything on Facebook nor do I partically even read it and Versus Is blocked from my account as I don't like all the posts they put up. Its very individual but its not reality and like all social media a bit of fun but no sustitute for sharing coffee and cake and putting the world to rights. I think your real friends will understand and if they don't then are they friends or just aquantences ? On Facebook some people have hundreds of friends but how many will they say hello to on the street? So don't worry about it. x
You're right Medway-lady there is no substitute for sharing a coffee and cake. The problem I find is all my old friends work so it's really hard to get together very often. I'm at least from the generation that still likes to chat on the phone whereas my children and their friends only seem to communicate by whattsapp and messenger. The art of conversation is being lost.
Yes me too. Ive lost a lot along the way. This group has helped a lot over the years. I find fatigue a problem so I only surface on here when I have energy. Each time I pop back there seems to be a whole new set of names.
I just focus on my good supportive friends , family and fantastic partner of 18 years. We don't live together, but spend every weekend together and see each other midweek. He is fabulous. He Hoovers and changes my bed too !
A walking acquaintance, that I only just met before becoming unwell has been so supportive, a friend now. It warms the heart.
Whilst someone I regarded as one of my closest friends only contacts me by whatsapp every few months. Always bright and cheery, but never responded when I suggested meeting up. I don't ask anymore and am mainly over the hurt now. But geez oh, we worked together, went on many holidays together, regularly stayed in each others houses. Friends for over 20 years. She lives 2 miles away.
So true but loads of clubs out there, ie book club, learn a skill ? anything really to hook up try your local library around here masses of groups to do stuff with U3rd Age / Bridge/ natter groups / Give them a go, you'll make new friends quickly.
I may be really out of touch but with the Vursus ads I have seen on TV & have asked friends what they think the ads are about - I got 100% blank stares.Must admit I only realised the ads were about arthritis myself when the word Versus speared on the screen.
Methinks there might be more 21st Century ways to spend money donated to the charity than expensive TV ads that don't appear to be getting the right message across.
Now I feel differently. I get annoyed when I read about people who are living with arthritis but not letting it "beat "them. The lucky ones who can continue hiking or running marathons. Although I'm glad for them I feel a pang of annoyance that it hasn't fought our corner. I think there's still a lot to be done in educating non ra sufferers which in turn may help us in our daily lives.
Having RA does not sum me up as a person. I don't want special treatment or understanding either. But do get your point of view, perhaps its down to personality but I can laugh at not being able to get into a packet of crisps, or do up a bra (not an issue for you I know , but you get the point) but still can spit nails if someone is sympthathic and I flatly refuse to apply for a blue badge. I'm not disabled just have a disease that is a bit inconvient and sometimes painful which does impact on life but isn't life threatening and is well treated. In time perhaps you'll get remission and then things might not be so difficult. Why not go to your local NRAS group if you don't like it no need to go again. Our local one is a bit stuffy probably down to age but well meaning and still nice.
Sorry I didn't reply earlier but I have cake decorating class on Thursday evenings. I did go to ra meetings a few years ago but it wasn't for me. To be honest I found it all a bit depressing. It may have improved now but I don't really feel the need to go as all the support I need is here. Between my husband, children, elderly disabled parents and 2 naughty jack russells my life is pretty full. Tonight however I have my bed all to myself as hubby is away on business....luxury! The underblanket is on high and I can't wait to climb into my nice warm bed.
I was in a terrible state last Monday, pain, nausea etc went to my doctor appt then had blood taken. The staff are like gosh your looking well, oh you look good, I’m thinking if only. Looks are so deceptive with this disease, I think it’s one of those things that if you haven’t experienced it or seen someone crying in pain there is little understanding and I don’t think that will change unfortunately. I resonated with the comment about saying no or even maybe to going out, never know how you’ll feel one day to the next and that I find difficult.
Hope you're feeling better now Daisychain? This is probably why people have such a struggle at Pip assessments. There's this idea that illness should be obvious all the time. In summer I tan really easily and look the picture of health. In winter I look like Morticia but a bit more grim.
I don't like it now when friends say "come for a few drinks on Friday night" etc as I know I'll be tired. I love it however if they say "Meet for coffee at 2" or "Meet for lunch". Still can't always do it but it's far more likely to happen.
I’m hearing you Paulywoo. Nights are just out for me too. Lunch much more likely to happen. The unpredictable aspect of my inflammation is what a struggle with most. Hope your keeping best you can...it’s been really hot here, 35 plus for a few weeks but a sudden coolish 25 is just perfect 😊 ps I tan really easily as well, just having a swim exercise in my pool for half hour a day has me looking well.
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