In regards to all symptoms, has anyone ever been told not to "let it get the better of you" ? And is it easier said than done?

[Claireb1985]

I'm having a big flare up due to having pneumonia and I keep getting told this.

[Hidden]

Oh yeah constantly. People haven’t a clue . Pre RA I was a busy active person and the word no wasn’t in my vocabulary. When I was diagnosed I said I wouldn’t let it beat me 🙄how little did I know it would wear me down. I don’t understand how people think I would live like this if I had a choice.

[Lolabridge]

Yes it’s infuriating how little some people understand (or try to!) about our condition and how it affects our lives. You may wish to “lose” some of your least empathetic friends.

[medway-lady]

I actually think its a good way to look at having a disease. It can't be cured but can be controlled although that can take time to achieve. But I think this sentiment means just don't let RA define you as a person. That means it's at this time you're finding it difficult but it may not always be like that. My RA is controlled and doesn't really impact much but other stuff does. It's the same for most long term of permeant health conditions some of which are much worse really, as RA won't kill you even if it is painful and unpleasant at times. I suspect it's hard for all of us but life goes on and we make adjustments, and it's vital to stay positive. I don't know how long you've had RA but I've had it for many years and it's treatable and so be patient and stay positive flares are unpleasant but having pneumonia can make you feel really down or at least it did me. Give yourself some time to recover then things may seem very different.

[Gilliancheche in reply to medway-lady]

I had a call from a doctor at my hospital discussing my situation. He was quite blunt saying my condition is incurable, but they were doing there best to minimise the symptoms and slow progression. In the meantime I have to live each day as it comes. Try to concentrate on the things I can do, have a go at things rather than assume I cannot do them. Each day is a gift try to use it. Not always easy I grant you. I have taken up meditation and try to stay positive. I think it does help. The pain is real but try not to let it define you. 💕🙏

[nomoreheels]

Not directly that but I do get… "I know just how you feel" coming from someone who doesn’t have RD so doesn’t have the foggiest. It gets my goat. Just come on here, let the frustration out. It won't solve the idiocy but we know how it is & can empathise.

[Marionfromhappydays]

You must feel absolutely crap having pneumonia, gentle squeeze for you and I hope your recovery is quick. Sets everything else off doesn't it so you get an extra bad time x

Yeah, my mum use to be like this and I understand the sentiment, if it was another RA sufferer saying this I would understand but if it was a "well" feeling person I think I'd want to tell them to piss off 😀

My mum understands a bit more now she's seen the affects and she would think twice about saying this.

[Deeb1764]

to me this goes back again to how much info you get given at the onset of the disease. IF told could be 2-6 years before you find harmony with it, I would find that easier than the here's your first med and in 13weeks will have your life back. So many on here have not go there life back even after 4-5yrs so a comment like that is not helpful. This is a day by day disease if NOT on meds that work and it will play with your head and you try to not let it define you BUT oh by some days............................................

[oldtimer]

Why shouldn't you just let yourself feel terrible when you do feel terrible? It's seems silly to me not to acknowledge that you are ill. That doesn't stop you still looking for ways to get better!

It feels a bit to me as though it is the other people who can't cope with seeing you suffer so you must put a brave face on it and pretend that you aren't feeling absolutely ......!

[Brushwork]

Hi Claire,We all find that people who don't suffer RA, really do not understand it. They roll out these sayings with not a clue of the magnitude of living with this chronic disease. The 'its just a bit of arthritis' is the one that really makes my blood boil.

I am past trying to educate most people, but occasionally try to explain the condition. Often to people who care enough to listen and have some empathy.

RA is a difficult thing to live with. It can't be seen, it schemes against us with it's coming and going whenever it likes, leaving people on the outside sceptical because 'how can you be fine on Tuesday and barely able to function of Friday?'. We can only hope that those close to us develop an understanding.

We all have to find our own ways of living with RA. You will find yours and how you deal with it may change over time because your RA will change.

Then there is the exercise thing... because we all know we need to keep moving as that helps our bodies remain mobile and we try to keep that going even when we are in pain...

Find your own path and devise your own reaction to what is usually "well intended" advice.

Make the most of the good days and be kind to yourself on the less good ones.

Go gently

[sylvi]

Yes i often say i won't let it get the better of me, but it is so hard at times. Keep trying to do your best.xxxxx

[grumpygirl]

I have started telling people I have Rheumatoid Disease as I think the word arthritis is misleading and encourages others to assume you just have the odd aches and pains that everyone gets with age. I have rheumatoid nodules in my lung and have in fact had to have part of my lung removed as one of the pesky things wouldn't stop growing. RD affects your whole body and organs it is not something that can be sorted with diet, the right attitude or wearing a flippin copper bracelet. I'm afraid I am quite blunt about it now, if I have to stuff my body full of pretty unpleasant chemicals to slow the progression of this disease and still lose bits of myself to it then other people can listen to the boring details of what it actually is.🙂Incidentally in case you feel a bit sorry for me I still manage my 10000 steps unless I am having a flare or my once a week methotrexate day and last week I climbed the fourth highest mountain in England!