Hello I just wanted to address all the comments on here about the RA Awareness Week video as I have been quite upset by the response this has had.
That is me in the video, a 30 year old woman who works full time. I have had RA since I was 21, so I've had to live with it my whole adult life, had to somehow build a career whilst living with this horrible condition for nearly 10 years, a condition that makes me feel like I'm 80 years old sometimes. I have lost a lot of my social life (something which we have tried to show in the video), and although my experience doesn't resonate with everyone, it is quite upsetting to me that a community that I have previously found so supportive can be so negative about an experience that is a little different to theirs.
The video is supposed to show everyone that even if I'm relatively 'fine' I still struggle with feeling drained and have to cancel plans and essentially not live my life. Someone said that it just shows 'a depressed person with RA', and yes that is true. I have dealt with depression because of my RA and really struggled with it. RA affects so much more than your joints and the physical pain you feel. It's feeling isolated and invisible, like no one understands what you're going through.
I have had family, friends and colleagues in the past not believe that I am unwell, and that is so so isolating. And the comments I have read here feel along the same lines, that I'm not 'disabled enough'.
My experience is one amongst so many others, but why is it less worthy to show? Because I am not limping or I can bend down? Some days I can't and have days I can't even get out of bed, and thankfully some days I can. And on the days that I can, RA STILL affects me.
A few years ago, we had the 'Behind the smile' video as our campaign video for RA Awareness week, showing a mum that works and looks after her kids, but says she's 'fine' when she's not. She also looked 'fine' on the outside but wasn't. That was a similar message to this video but received little, or no backlash. So I'm just wondering why my experience has been received so negatively.
I will also say, if you are willing to be in our video for RA Awareness week next year, or even want to create one yourself for us to post this year telling your story, please do get in touch. We do struggle to find people for this but welcome anyone to share their stories. It is scary to share your own story, and as I've found, you can be subject to negative and upsetting comments. But I don't regret sharing my experience at all. I am done feeling invisible.
*Please note all thoughts are my own, and I will not be responding to any negative comments*
Yes one size doesn't fit all and I would at a guess look at it it's not our story. However it's done and just leave it there is my advice. Sensitivity and social media you have to be tough.
Thank you Anita. My comments were not about you but I just thought there were many opportunities to show how difficult simple tasks were in the video. I appreciate the intention of the video but I don’t think it will read like that to people without RA. I think this is more about the production of the video. Certainly no reflection on you. Thank you for volunteering to do it.
Totally agree with what you said and I have already said one size does not fit all with this bloody disease.
I think my main issue is to get the point across to other who don’t live with this it’s hard enough and for us all including you it’s tiring to have to keep explaining. But I don’t feel the video “says” enough ie words.
I have suffered anxiety and isolation and my humour was needed to get my head out of a bad place when I saw the ad, and was not about you but how can we explain this disease in a way people get.
We all get the finger raised with oh I have a bit of arthritis or when you say fatigue people reply oh yes I am so tired today.
So it’s trying to work out how we can get that out there so people start taking this disease seriously and in turn start donating to such a great charity 🥰
Oh Anita…if only what I have just read…was what I read yeserday…I would be cheering you on & saying Thank You- for saying it like it is.
But sadly what I read & saw made me think a charity like NRSA needs to bite the bullet & really say what dreadful diseases full blown RA,(& all the other associated Auto Immune diseases are) …not portray what PollyAnnas we all are…….because we cope.
My comments,& I’m sure everybody else’s replies are certainly no reflection on you….we all know where you are coming from…and that is what those who don’t know- need to understand.
My comments were definitely not aimed at you but rather the production of the video. What you have described above is not what came across in the video. Please don’t take it personally.
In an awareness campaign for people who don’t know what RA is we need to see the days when you can’t get out of bed too. As I’ve said please don’t take it personally.
I’m sorry but haven’t seen your video or any comments. So I would just say that I have had RA for many years now including before I retired and it never affected my career or my family because(and I might well be one of the lucky ones) the medication worked. I strongly believe that I don’t suffer with RA but live with it. So whatever was said ignore as with this condition there is no one size fits all, be that medication or the way it affects the individual. But we can live well it’s not terminal and it is treatable not for all but it is a journey that needs patience and we travel on our journey individually with hope.
I'm really sorry you've received negative/unkind comments re the video - I've just watched it to see why people would respond negatively but I can't see why! On the contrary I can relate to the video and your experience (I was diagnosed with RA when I was 25 and am now in my late 30s). But ever since I started biologics, I live a more or less normal life, the only real struggle I have is with my right foot, which has sustained permanent damage due to uncontrolled inflammation back when I hadn't yet found the right combination of meds for me.
I suppose because our experiences with RA are so different there would always be people who don't feel represented no matter who was portrayed in the video. I wouldn't feel represented either if someone was portrayed at the other end of the RA scale, not responding to medication and severely disabled etc. but I should hope I wouldn't write unkind comments and remember we are all different even though we all have RA.
But NRAS put this out in Rheumatoid Arthritis awareness week to show people the challenges we can face, that’s how it failed for me, people I showed it to didn’t get the message that was being portrayed, 🤷🏻♀️
Hi KittyJ, I'm sorry the people you showed the video to didn't understand it. Like I said, its probably impossible to make a video in which everyone with RA feels represented and which explains the disease to everyone else. I still have to explain RA even to people close to me after over 10 years so it might simply not be possible to get everything across in just a few minutes! Have a lovely day, Christine 🌞
I’m sorry you felt comments were attacking you personally , it definitely was not intended that way, it was the topic that was chosen and how it was projected plus the fact we were encouraged to share it to show “living with RA and the challenges a lot of us face” for RA awareness Week. It should have more impact than the video chosen ( yes I did show it to some people and they were as perplexed as me). I don’t recall seeing posts asking for volunteers here, I’m sure many would offer if you asked.
I'm so sorry to hear how upset you've been about the comments made as I certainly didn't intend to hurt you by my responses. I am newish to NRAS and RA and greatly appreciate having the forum to read other peoples experiences and wisdom and ask questions. It is a very steep learning curve.
As we are all aware, there is a massive variation in how RA impacts on individuals and the degree of disability caused by it. My concern was not that you were not 'disabled enough' as you commented, but that although it was your story, you were also carrying the weight of representing a whole group of people. It would be impossible for one person to represent that wide a range of experience and for me this was where I felt the video wasn't strong enough. I look as if I'm ok (most of the time) and it is so exhausting trying to explain my RA symptoms to others that I have given up. I had hoped that the awareness campaign would help with this but it just didn't explain clearly enough what was being experienced which left a lot open to interpretation and, as I said previously, I thought that a voice over might have strengthened the message.
Anita i haven't seen the video darling. I understand everything you say about your illness. I say we all get depressed with this diseased even if it is only a day a week, a month or longer we all suffer with the depression. As to making a video i wouldn't know how to go about making one darling. Don't despair about the negativity from us all darling we are all behind you. xxxxx
Thank you Anita for being brave enough to share your story. The comments made were not made towards you but towards the actual content of the video which did not heighten the awareness of the awful condition that is RA. However, there was an element of positivity that on good days we can almost be "normal" until we hit the next brick wall.
Having just watched it I'd , firstly I'd like to say thank you for doing it secondly it is a good reflection on fatigue. Yes some days are extremely painful but other days we function ( albeit slowly and with great fatigue) NRAS are trying to show the public RA gives us fatigue ( not just tired but the draining fatigue that lasts all day you feel like you have concrete feet . Living with constant pain and fatigue does make you feel low or depressed but we should support other sufferers cause if we don't the general public won't .
Hi Anita, like others have said, I don't think the comments about the video are aimed at you. I think the video did protray that a 'normal' healthy-looking person can be suffering. However, I also think it was a missed opportunity to portray the full extent of the disease. I also listened to Kirsty Young's appeal on radio 4 and felt that was also a missed opportunity - she only mentioned that it is an auto-immune disorder, joint pain and possible organ damage. Like others, I have struggled for years to get anyone to take my disease seriously. I am waiting for awareness to be raised about things like: serious, debilitating, life-altering fatigue; immuno-suppression and living with constant infections due to the medication; comorbid conditions like Fibromyalgia; joint deformity; surgery to replace joints; damage to a variety of organs, including the eyes, for example. I actually wish we could remove the word 'arthritis' from the name of the disease, since it causes so much undermining. Perhaps as a community we put put together ideas for a video next year.
Also agree with you about joint deformity and affecting organs, as it has attacked my eyes and methotrexate attacked my lungs. I know it would be scary for people newly diagnosed. Those things may be quite rare but they do happen and we need the full story at some point while explaining it is rare. It can be a seriously debilitating condition to deal with daily.
Yes, I totally agree. I don't know if it is rare, though (the organ problems) - I mean, I don't know the rate at which people get those things. Like you, I am also having eye problems, it is actually quite worrying, inflammation may be causing Giant Cell Arteritis (to be investigated). I am completely in favour of the full picture of the disease being known, from common to less common problems - I didn't realise until I came onto the forum how widely the complaint is held that other people do not understand the disease and don't take it seriously.
Good morning Anita, thanks so much for your post about your video to us. I showed the video to my other half last night as well as watching it myself and we both thought how well you got the message across about the fatigue part of RA. We loved the battery phone idea as so many people will relate to this so well.
It is so hard to raise awareness of RA as it affects us all so differently. I really related to how you showed the morning struggles of living with RA and being so fatigued before you even start your work day and the disappointment so many of us feel when we have to cancel plans due to our RA.
It is such a fine balance between raising awareness and not scaring people especially newly diagnosed isn’t it? All of us have good and bad days even when our RA is classed as stable and I think the video showed that so well. So subtle but so powerful at the same time. I really connected with your video. I have had a really tough ride with my RA but on the whole I feel thankful for the care I receive to try and live life with RA.
Thank you for all your hard work with this video. My other half said straight away that is so you on one of your better days with your RA.
Dear Anita, it was brave and generous of you to volunteer to take part in the video. My own criticism was in no way intended to be personal, so I apologise if that has been its effect. You have expressed your situation so clearly in your written post, and I only wish that the production of the video had the same clarity and impact. RA is a slippery beast as it varies and fluctuates from day to day and person to person. We all know this; people unfamiliar with the condition do not. I simply believe that this particular video failed to fully communicate both your own struggles and those of the RA community in general. Please believe that no personal judgement was intended. Thank you.
Thank you Anita for doing this video. I watched it yesterday and I’m sorry I didn’t comment then. I could see exactly what you were trying to out across although as someone else has said, maybe a voice over would have helped. But I thought it was good to show that RA isn’t just about the swollen, painful joints that lots of people associate with arthritis. Most of us comment on the fact that although we may look fine, we’re battling with the fatigue, the fact we have to alter plans, cancel social occasions etc which most people just don’t get.
No judgement on you but what a missed opportunity this has been to educate people not suffering with this disease. I found it was lacking a punch and if I hear well at your age you're bound to have arthritis so yes this video has dismayed me.
Hi Anita, I hadn't seen the video but have just watched it having read your post. I spent about 7 years at the end of my 20s and early 30s being told the swelling in my knees was just a fluke injury, housemaids knee, having part of my meniscus removed entirely unnecessarily, being advised to delay having my children by the GP (which thankfully I chose to ignore), osteoarthritis and finally a medical mystery. Alongside the pain and swelling, I had constant fatigue and debilitating drained feeling, but at no point did anyone (friends, family, medical professional, me) consider RA. It was only thanks to a private physio who I was lucky enough to see suggested the possibility, that I eventually ended up with a referral to Rheumatology when I was about 35. Throughout this time I managed to hold down my job, but like in the video, it was the social side that fell by the wayside when it became too much. This was something that felt really difficult and I know others felt put out by this.
For me personally, I think your video could have really helped me recognise the possibility of it being RA and then fight to access treatment far sooner than I did.
So thank you for being brave and sharing your story.
I’m fine too. Had RA almost 30 years, since I was in my late 30s
My joints have little damage, yet my RA is classified as severe. I walk my dog every day for 3 miles - I play golf, sometimes 3 times a week. I can do this now because biologic drugs keep me fine, mostly…. Yet, I have days when I struggle, I have break through flares, playing golf wipes me out some days.
Life before the biologic drugs was much more difficult and painful.
My diet is dictated by my desire to stay well as long as possible, so is quite restricted. I’m scared to change it as, for me, my lifestyle appears to be working for me.
I worry about when the drugs stop working, constantly aware that this life I now live, might change quickly and dramatically.
People don’t see the side of me exhausted and a little afraid, only the “I’m making the most of this life” side.
I can't possibly imagine that anyone could have negative comments about your video, Anita. It makes me sick to hear that you got some. That's really horrible and I congratulate you on your response. Awful people.
None of the comments posted yesterday that I read were in any way directed at Anita personally. Rather, they criticised the production and representation of RA shown. NRAS asked for the video to be shared. I, amongst many,, explained why I wouldn’t be sharing it.
I apologise to anyone who is offended by my comment. We all have different ways of looking at things and I thought the video was very good. My initial reaction was over the top! So, sorry.
As many others have said, this wasn't directed at you personally but at the NRAS. When making videos and campaigns for awareness weeks, and there are many of them out there, they are not made for the people with the disease, but the people that have never heard of the disease or have heard of it but don't actually know what it is.
An awareness week video needs to draw attention to the issues. One of the issues is difficulty getting a diagnoses for instance, and that would be a good theme to get across. That would help people that don't yet have a diagnosis or even a name for how they are feeling. It is also to raise awareness of what the charity does. So perhaps a video of someone calling the helpline could have covered that.
It should also inspire people. That could be inspire people to donate, or inspire people to help those with the condition. So the video could have modelled positive behaviour by having the friend rearrange the pub afterwork to a Sunday afternoon tea in a cafe for those that couldn't make the pub afterwork. Modelling positive behaviour will send a message to those that don't know anything about RA and the other similar conditions that there is something they can do to help that doesn't involve donating money.
It should also educate people. There was no indication of the wide range of symptoms that can affect people with RA. It didn't get across why there was another night of broken sleep. It didn't explain what a flare is.
And it should show how things can change with behaviour change. So imagine the smile on your face when your birthday friend messages back that you can meet on Sunday afternoon. That shows a story of a behaviour change that the audience can embrace and can make a change to someone's life.
There is a deep structure to all awareness videos. It is the same deep structure whether it is for a health condition, a 'save the otters' awareness campaign or a DEC video after a national disaster. It needs to clearly show the issues, educate people, inspire them to act, and show how their action can made change. Hopefully the NRAS will be working now already on next year's video and will be able to improve it. It isn't easy to create content, which is why we have specialist companies for that.
Anita I’m so sorry that people have negatively commented on this video.
I didn’t catch it the first time but I just watched it and this is a very realistic picture of my then working life years ago before my disease progressed and it’s presented in a way that is easy to understand. I think it captures the mundanity of spending all your energy before you even leave the house and the text messaging cancelling plans is so very accurate.
Many people exist in this way, and it gives visibility to people stuck in this loop. I don’t think it’s always necessary to show extremes, it’s equally valuable to show the monotony of daily lack of energy and daily pain but yet still having to continue and go to work. I think it is valid to show this ‘level’ of the disease.
The majority of my time with RA has been spent in a phase of ‘not quite ill enough to stop working but not quite well enough to work and have a life’. How to show daily living with an invisible illness? Well exactly like this video! so well done and don’t let the comments get you down!
The top and bottom of this debate on how RA affects people is that it is very difficult to explain, either via a video or words if you have not been affected personally by this disease. I remember Versus Arthritis putting an advert out on National TV a few years ago about a young man affected, not being able to get out of bed and attend an interview. I had just recently been diagnosed so I got it, but I really don’t think unaffected people did. My husband who had seen me struggle for a year before diagnosis, did not think it got the message over and neither did I. They have released one or two more but to little effect. I honestly don’t know what the answer to this is, but I do say thank you Anita for trying to explain, I got your message, but then again I would. Whilst ever people still think rheumatoid arthritis is osteo arthritis but a bit worse, the problem will persist.
Just an after thought, maybe an advert or YouTube video is not long enough for the complexity of this disease. Bob Mortimer referred to suffering from it on the latest episode of Gone Fishing and he did stress it was RA but when asked how it was treated he said “steroids and stuff”. It was a fishing programme so not expecting an in depth discussion but maybe a programme or programmes on RA on National TV with enough time to explain what happens to people affected, could help educate others. Who knows one day it may affect them.
Can I also say that I think it’s important not to frighten people who may get or are newly diagnosed with RA as I believe that sometimes we can blame every little ill or big ill is down to the disease but sometimes it’s not. I have CKD and Hashimoto’s thyroid disease so the fatigue could be down to anyone of those 3 conditions, or even that I’ve overdone it as I’m not 40 anymore. And age and general fitness contributes to our overall well-being being 70 I’m clearly never going to be able to do some of the stuff I did at 40/50 even though I had RA then. I think sometimes educating or informing should be positive as those who come after us will not experience hopefully the trials I did and the lack of information back in those days. I have no deformed limbs neither pain, have never been depressed or had to endure the trails of some really nasty medications unlike friends who have had terminal diseases. So RA is a shock at first and does mean medication so can be hard too accept, however I know not for everyone, but as time goes on treatments have really progressed so if newly diagnosed you should be able to look forward in time to a near enough normal life. I think we have a duty to say don’t think life is over with RA because positivity and humour play a huge role in mental well-being. I have the scars of an RA patient but am neither a warrior or a sufferer just a human being whose life took a slight turn from its path some 25 years ago.
Please be assured that my comments on the video were in no way a personal attack. I felt that the video did not show the effects this horrible condition may have on those experiencing it. It was always going to be a difficult job portraying the issue of fatigue but I feel it missed the mark. I showed it to others who did not 'get it' either and these were people who had seen it's effects on me.
My comments were in no way a criticism of you, but of the video. It lacked impact. I realised from later comments that the budget was tight so it was done in house, and I think that might have been a mistake. Yes it portrayed a real aspect of RA but not in a way that was easily absorbed.
Three minutes is a very long time to hold people’s attention, so there had to be more to achieve that. I showed it to a friend who turned it off after 45seconds. A voice-over emphasising the impact or drain of each tiny movement might have helped.
Anita I’m sorry that you took the comments people made personally - it really wasn’t about you, it was more the message of the video.
No-one can deny your lived experience with RA, it’s something that we all have in common to some degree or more. We also share the frustration that as an ‘invisible’ disease friends and loved ones can’t see our pain or fatigue, it’s something you have to experience to truly understand and this is where the message of the video got lost.
We all know what it’s like and unfair as it seems it’s up to us as a community to educate others - really spell out the range we all experience across good days, bad days and full on flares. In the process hopefully kith, kin and employers might be more sympathetic and people might feel inclined to give money towards research.
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