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...
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.!
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
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
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
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.
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.
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. 🙂
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'.
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.
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 😘
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!!) 😅😅😅
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 .
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.
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.
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.
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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