Dear All,
Happy Monday,
If you have not heard this week is RA Awareness Week, please see a link below to a YouTube video, this will help all of us spread the message of living with RA and the challenges a lot of you face.
It would be great if you would share this with your friends and family on social media
youtube.com/watch?v=n_GNF_s...
Kind Regards
Tim@NRAS
I’m sorry to be negative but did I miss something here, is it just me who watched this waiting for all the challenges we all face every day in this video? I was hoping to share it so people could better understand my RA but I won’t be as I already have the “my hand hurts a bit and is stiff, or I feel drained at the end of the day too” comments and this doesn’t show the reality at all for a lot of us here. Maybe it’s just me and if so I’m glad it helps others but I’d be interested in others thoughts 😊
Totally agree - the agonizing pain I experienced with RA was unimaginable- worse than childbirth (& at least pain during childbirth ends).
RA inflammation affects multiple organs (my physical & mental health are ruined) & my meds are characterized as high risk.
This type of ad perpetuates a myth that RA is just a little joint pain. Immediately not. 😵💫
Unfortunately I agree. Missed opportunity to give information on this disease and how it can massively impact day to day life.
Dear all I am sorry this year's NRAS' RA Awareness Week video has not resonated with you. The young woman in the video is someone living with RA herself and this is her experience. Everyone's experience is of course different and the overwhelming fatigue is something that many who contact our helpline talk about as being completely misunderstood by colleagues and families. Hence that was why we focused on this particular symptom this year. Previous campaigns have focused on impacts on life of having RA.
We were very restricted on funds this year so this was produced in house as best we could. We fully take on board all your comments and feedback and this will be considered when deciding the theme for next year's RAAW.
Thank you for your response, Clare, and I very much hope that the young woman in the video isn’t in any way upset by the negative response to it. Fatigue is indeed one of the worst aspects of RA, but I do feel that the video doesn’t project this strongly enough - a rare miscalculation by an otherwise splendid charity.
I agree. This video isn’t raising people’s awareness of RA, it’s showing someone with sore wrists.
Where’s the evidence of how difficult it is to make a coffee - I can’t lift my kettle even with only a small amount of water in it, the difficulty getting the lid off the coffee jar, the risk of dropping that glass jar, the difficulty of get off a chair (in meetings I used to make sure I was last to leave the room so that no one could watch the issues I would have with the stiffness that comes with sitting for a couple of hours), zipping up a bag, the list is endless!
I resonate with everything you have said. Even putting hair in a scrunchie impossible.
Meetings at work before I had to finish work, were hard work. If there was a pile of papers in the middle of the table for everyone to have a copy, I couldn't get up off the chair to reach, and yes always last to leave, by the time I'd got up everyone had gone.
The video shows the real fatigue.
Whoever decided to circulate this publicity describing RA hoping to get contributions obviously has no idea what it entails …lives & relationships are ruined by RA…it is not just feeling a bit tired & not able to attend a meeting.
Today waits for a diagnosis can run in to years…it’s not just popping along to the neearest private hospital with your cheque book.
oh I am glad it’s just not me I watched it and thought wow everyone will think I have achy wrists but should be doing full make up and making a cuppa and brush it off as a pesky thing!
I wanted to slap my head against a brick wall. Won’t be sharing this as I had hoped take. 4 years hard slog of explaining how tough it is and this video will be a back step!
sorry I’m a negative voter too. It really doesn’t show the reality . Makeup and work have gone by the way side as has my social life due to RA. No wonder people struggle to get the help they need and I include financial help if this is used as a training aid. Feel this has been a lost opportunity to educate people what a horrible disease RA is .
Afraid this misses the mark on lots of levels, plus it's down right boring 😴
If my wrists and thumbs allowed me to double-tap phone messages as adroitly as shown, I would think I was having a very good day indeed. Sorry, NRAS, but this video falls far short if it is intended to depict the realities of living with RA. I’m afraid that I won’t be sharing it.
I wonder if we will get a reply from Tim at NRAS …explaing why/how this video got it so wrong?
I have every respect for NRAS, so I’m sure there will be a response. It’s hard to believe, though, that anyone who has actual experience of RA was involved in creating this video.
I think that is what everyone here thinks.It reminds us of when Versus was formed & advertisements appeared on TV that hardly mentioned RHEUMATOID….just arthritis- which everybody who had no experience of RA…..just thought it was a bit of an achey finger & presumed OSTEO arthritis was the same disease.It’s very disappointing isn’t it?
Agree. Such a missed opportunity to spread the truth
Unfortunately I have to agree with the above comments. It’s very boring to watch, I nearly gave up and I’m interested in the subject matter. When I was flaring a couple of weeks ago I couldn’t even make my own breakfast as I couldn’t grip the milk bottle. Me rubbing my hands and wrists a bit is me on a good day.
NRAS you are great but this video unfortunately isn’t. Sorry!
Oh dear. Was it that the horror show that is a full-blown RA flare too awful to show the public, or is it just a rather boring mimsy representation considered a safer illustration? It was a lost opportunity and it makes me sad. Trying to explain and educate my family and friends as to why my life has been destroyed by this condition could be negated by this representation. I hope they never see it.
oh dear. What was that about ? Can only agree with comments others have said. Actually lost for words & disappointed that this does not convey any sort of resemblance to the real effects of living with RA. What were they thinking? 🤷🏻♀️
Agree with everyone else. I certainly wouldn't show this to anyone else to "educate" them. On my bad days I wouldn't be able to hold a hairbrush let alone be able to tie my hair up with a scrunchie! And as for holding and pouring a kettle...
Not used a kettle in my house for at least 15 years…if I had….no doubt I would have dealt with scalds many times!
I totally agree with everyones comments. This video does not reflect what it is like to have RA. It’s so much more than a bit of pain in your wrists! Disappointing and a missed opportunity to really show what having this condition means on a daily basis so sorry will not be sharing.
Hi don't want to rock the boat, but I don't have any problem with the awareness video, people with RA do work, having been diagnosed when I was 18 I'm now 61 I've held down jobs a veterinary nurse, cardiac technician, teaching assistant, and having my son in between, had a great social life in my 20's 🎉🎉 obviously it difficult at times, and as I've got older it's got a bit more difficult, but what I'm trying to say is that RA treats us all differently, my first year was a nightmare and my hands deviated, I could go on but I won't 😁 best wishes all
“Work disability is a major consequence of rheumatoid arthritis (RA) [1–4]. Although RA is cumulative over time, 20% to 30% of patients become permanently work-disabled in the first 2 to 3 years of the disease [5].Mar 12, 2010”
Yes, RA treats us all differently
Unfortunately there is absolutely no way I would share this with anyone! If the theme of this was to highlight the impact of fatigue, then I’m afraid that went straight over my head and I can’t see that it will elicit much in the way of sympathy or understanding from non-sufferers.
There was no sense of tiredness - as others have said, achy wrist seemed about the sum of it.
If she’d had a shower and started to show that even drying herself/her hair was exhausting it might have been a better illustration. With a bit of build-up, eg getting dressed, coming down stairs (how easy was that!) feeding the cat (ditto! full knee bends!) etc it would be more believable that by the time she got to tying up her hair it was all too much.
Budget should not affect the outcome - it’s the script that needed a bit more oomph. Before I had to give up work I was a journalist who branched into making TV programmes - writing scripts, filming, editing etc and I would happily have helped out on this for free - and offer to help on any future media projects.
This is not me pitching for work, this is me offering up my past professional experience in addition to my lived experience as someone who’s had RA for the last 25 years. I want nothing in return except the opportunity to REALLY put across what it’s like to live with this wretched disease because I don’t think I’ve ever seen ANY campaign here or abroad and thought “yes, they nailed it”.
Bravo. Well said. Totally agree.🤓
( & regarding fatigue, I have severe RA and often have to lie down after just applying lipstick or I would keel over. )
It is very hard for anyone to understand the pain and suffering of anyone with RA, I am now old and my hands and feet show the classic RA picture of untreated RA. It can be easily identified, and difficult to hide ,so I now get the sympathy vote. But when we are young and it cannot be seen. It is imposible for others to understand our pain and frustration, especially if they have other hidden conditions themselves. Nobody wants to listen to someone going on and on about their aches and pains.I have suffered from RA from my late 20s. The pain was unbearable for decades. When young , I was a very attractive woman, slim, good figure, pretty face. I had a stressful job which I loved and continued with full time for 40 years. I lived through the pain. I wore high heels, mini skirts,and tried to hide my pain from loved ones and those I worked with. What was the point of putting my RA on display ? Others could not see my pain, and why expect them to suffer on my behalf. I would get up at 5 and take my meds and keep moving so that by the time I left for work , the stiffness was slightly more manageable . My rheumatologist was at a London teaching hospital and he once shared my Xrays with a group of medical students. He asked me to walk and do a twirl. Which I did.He then said do not judge a book by its cover. He said her Xrays are worse than the previous patient in a wheelchair. He said 'What makes someone just get on with it?' Throughout my life I have tried to be positve, I research all I can about RA, I keep slim, eat a healthy diet, and find exercises I enjoy. I spend time with family and friends, I loved my job. Yes the pain made and makes me frequently short tempered, impatient , miserable and sometimes very sorry for myself. However I realise there are lots of people far worse off who have other illnesses, disabilities, or multiple conditions which they have to cope with. I learned what gadgets to use to make my life easier and found easier ways of doing jobs. Do learn to live with RA and make the most of the precious life we have been given and be grateful that new meds might make this condition a disease of the past.
👍👍👍💞💞💞
Love your answer. I also have the deformity from before biologics so its obvious I have something and also by how slow I walk. However, like you I've found ways to live with it not be defined by it.
unfortunately I don’t really feel the fatigue theme is obvious, and actually feel the video trivialises the challenges RA patients face. All we see is her looking weary and rubbing her wrist and fingers, then off to start her day. I think if you’re looking to draw in more donations, you have to hit hard the struggles patients face. In this cost of living crisis, people are more selective where they spend their money, and this video wouldn’t have me thinking I must help them, when other charities are pushing the struggles much harder. Sorry but that’s the way I feel
I have only just watched the video and have to agree with what has been said. I certainly will not be showing this video to my family and friends because quite frankly I felt it completely trivialised RA and the pain and fatigue we suffer. I can’t imagine anyone watching the video understanding what the impact of RA has on the patients and families . I’m having a bad day today but went for my Covid booster. The pharmacist did it and asked why I was using a walking stick? I told him I had RA , to which he asked me which joint was it in! Was it my knee he asked? I then had to explain in a few words what RA was (Autoimmune Disease) This video has done nothing to show anyone how painful, disabling and tiring RA can be or shown how we can have good days followed by flare ups for weeks on end. To me , that is a very important message to get across to people. I feel it has been a missed opportunity. I am sorry to write this as it’s no reflection on the lady in the video, but I’m so disappointed.
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