'Behind the Smile' - RA Awareness Week 2017 - NRAS

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'Behind the Smile' - RA Awareness Week 2017

Shivam-NRAS profile image
46 Replies

We just wanted to let you know that further to a recent poll on about themes for RA Awareness Week 2017, we took your responses (over 290!) into consideration and decided on a theme! - 'Behind the Smile'. The theme will focus on the invisible effects of rheumatoid arthritis, especially fatigue, anxiety and depression.

A part of our inspiration also comes from a recent campaign, wherein we created a film in collaboration with Lilly UK to highlight what goes on behind the smile for someone with RA. Take a look: youtube.com/watch?v=5wI5RVW...

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Shivam-NRAS
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46 Replies
allanah profile image
allanah

Think that's a great title which reflects my everyday , x

Shivam-NRAS profile image
Shivam-NRAS in reply to allanah

Thanks @Allanah, we think so too :)

Gigi71 profile image
Gigi71

Over the years this has Been my mantra, when asked, except to very close family and friends, but even then I known for not making a fuss. When it comes to my rheumatologist Gp etc, I make sure they know how I feel and how I expect them to help me improve my life. It mostly works.!

trish1957 profile image
trish1957

I think that sums it up really well on the video. Very emotional.

Mhairi54 profile image
Mhairi54

That could've been me in that video! So true.

Matilda_1922 profile image
Matilda_1922

This is how I feel😕

sylvi profile image
sylvi

You look at me and i don't look at a lady who has ra and other diseases. A nurse told me when i was having my infusion that my diseases does not define me because of my attitude to the disease is i won't let it beat me.xx

Neonkittie17 profile image
Neonkittie17 in reply to sylvi

Too right Sylvi! Never give in! A rheumatology consultant once said to me ... I'd like to talk about your disability. My reply was .. I'd like to talk about my ability actually! It was the same guy who said I would soon be in a wheelchair. He soon disappeared and I'm not surprised ... demoralising patients like that! xxx

JEM95 profile image
JEM95

That's a great filmette. I think many of us can relate to Jane - I certainly can.

Daviator profile image
Daviator

Good work

dickfend profile image
dickfend

I couldn't agree more with this film. It really does explain how people like us feel. Will it be broadcast to the nation which is something that needs to happen more often, for people with RA to be shown how it really does affect them. However, unless we all walk about with a label that says, "I have got RA" we do try a hide the facts. Well done NRAS!

That's really good wish I could do my old life but as time goes by it takes more and more of the old me and people can see you are not fine

MickeyJoints profile image
MickeyJoints

Bought tears to my eyes. Well done NRAS - captured it nicely with a great production and actors.

BoneyC profile image
BoneyC

Shame they picked an actress in full makeup, how did she manage that with RA?

helenlw7 profile image
helenlw7

That video is brilliant - describes my life exactly!

helenlw7 profile image
helenlw7

That video is brilliant - it describes my life exactly! Thank you.

stbernhard profile image
stbernhard

What a brilliant film. Short and to the point. I was lucky that I felt I could be completely honest and open to the people who helped me through the first year of RD before I was able to take control myself. Knowing that you can be open and the professionals listen, understand, take note and care is a great benefit.

Denise64 profile image
Denise64

It sums up life with RA , I do this every day as I'm sure you all do.

But I'm now thinking I should say ya know I feel awful today and I'm going to rest up. As i just keep going n not stopping to take a breath and therefore peolpe think I am OK when actually I'm not at all

But then again a bit scared to slow down as don't want this illness to rule my life. if only peolpe really knew how we all feel.

So I thought the video said it all

Denise xx

Mhairi54 profile image
Mhairi54 in reply to Denise64

Know exactly what you mean Denise. I tend to battle on too even though I feel terrible.

Lulumae profile image
Lulumae

As has been said before, that was/is me. It depends on who is asking me as to how I respond. I find that of late when I say how I really am it ends in tears ( my gp, my nurse and consultant) after admitting how I really feel, I feel like a great weight has been lifted from my shoulders. If we don't tell people how we really feel they can't help us. Brilliant video, made me very emotional

It's great, not just for RA but all invisible illnesses. Thank you NRAS. 🙂

bradfordjoanna profile image
bradfordjoanna

The hidden part of this condition is ghastly. Thank you for this.

Joang profile image
Joang

This made me cry - it could be me in this advert

Spencey profile image
Spencey

That is a fantastic way to describe how a RA person is I can relate to that video

Mumbledore profile image
Mumbledore

Excellent video. Have consultant appt soon, will not be saying 'fine'.

Patsy-57 profile image
Patsy-57

Film ok but as another person commented shame she has make up on. My husband can tell by my face how I am, other people don't see it. The face she pulled as she dropped the things in the corridor was really good. The face that says 'Oh no well you are just going to have to stay on the floor cos I cannot pick you up'.

Patsy 57

sylvi profile image
sylvi in reply to Patsy-57

My hubby only has to look at my eyes Patsy to see how i am and most of the time i look rough some days i look better than others.xxxx

Patsy-57 profile image
Patsy-57 in reply to sylvi

Hi Sylvi,

I am exactly the same. My eyes and also my face loses all colour and goes grey. He can tell by the amount of time it takes me to get out of bed and dressed just what sort of a day I will have.

Patsy 57

Kb5417 profile image
Kb5417

As a mother of two and a working woman with ra I can sort of see where you were trying to go with the video but there is soooooo much more that could have been added. And I'm sure she definitely wasn't fine after about half an hour in heels !!!!

Is there one in production for the ra gents too ? As this doesn't address their 'I'm fine' struggle.

And although we know we're not fine the symptoms are invisible and need to be highlighted to non ra sufferers which this video does not do and just reinforces the fact that we look normal (define normal 🤔) and because of that no one, not even medical professionals, will ever understand just how not fine we are.

Full make up, normal bra and heels 😂😂😂😂😂 now that would be just perfectly fine 😘

Ducky62 profile image
Ducky62

Absolutely spot on, if I had a £ for every time I said "I'm fine". 🙄

Padram profile image
Padram

Yes, time we are fine with not being fine.

I have Severe Osteoarthritis, but look perfectly healthy on the outside, but screaming on the inside, but hey 'I'm fine' (full makeup, smartly dressed in slippers!!) 😅😅😅

Roggles profile image
Roggles

Just perfect.

Hessie5 profile image
Hessie5

Very powerful as I use those words everyday as I don't want my family to worry they have enough in their plate.

Rednoseday_01 profile image
Rednoseday_01

It's so true no one really understands only other suffers and that's just how I am I find it easier just to say yh yh I'm ok

Cath56 profile image
Cath56

this is exactly how ive felt over the past year it was as if i was looking into a mirror quite sad and emotional. you dont want to burden or let people think youre pretending so 'we are fine' this video is brilliant and will let people see we are not pretending or looking for attention 'we are not always fine ' just take a minute and look at our faces /eyes . Thank You RA .

Hellie1995 profile image
Hellie1995

I have had this mantra for the past 2 years, up until yesterday when I went for my 6 monthly review. I saw the ra nurse instead of consultant and built up a good rapport with her, I told her everything and she informed me I shouldn't be in any pain at all they are there to help. I had a steroid injection readjusting the mtx and looking at hydroxychloriquine as I think theses are making me feel ill. I came away feeling really relieved and was so pleased I told her exactly how I felt.

gillclark1 profile image
gillclark1

It is very honest and made me cry as that is exactly how it is for me at the moment and deep down I don't feel 'fine' at all

Snooze-Master profile image
Snooze-Master

This is me, very very good film, seeing her hands slide the bread, sitting on the edge of the bed, really really good job.

cabbie profile image
cabbie

Really lovely film made me a bit emotional.

Damaged profile image
Damaged

Interesting approach. I for one see signs of RD everywhere. It is not always invisible . I am often left unable to walk or stand up without assistance. What does irritate me is when someone says, at least it is not 'cancer'. The truth is, it would be so much better. At least remission is disease free not still suffering. There often is a cure, not the case for RD. Insurance, medical services are more readily available. Here there is a six week wait for social services and a six month wait for counselling. My GP asked again about sending me. No one has a chronic illness or chronic pain without needing to make radical adjustments. But I have the training to manage on my own. I would far prefer the services go to someone who needs it more than I do. It is beyond comprehension, that a condition which affects our economy in such a devastating way . I am so Angry that I can no longer do much of anything. But I am not alone, we have each other. At least one percent of the general population. That is serious clout if we work together.

Hellie1995 profile image
Hellie1995

You don't have to be "just fine" the rheumatology team are there to help you be pain free. If you talk to them they will adjust your medication to suit.

katmcl13 profile image
katmcl13

It was like watching my typical day! Wow

dwsurquhart profile image
dwsurquhart

Excellent video, is it OK if I share this with my local arthritis centre?

Shivam-NRAS profile image
Shivam-NRAS in reply to dwsurquhart

Yes of course :)

Pamelah5 profile image
Pamelah5

Brilliant film, says it all. What i use to be able to do as well as many others as everyday normality, we now at times struggle with some daily chores.

I do tell my rheumatology nurse or consultant exactly how I feel. If you don't say they cannot help x

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