RA Blog Week Day 3: Advice

September 28, 2016 at 2:25 pm | Posted in rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
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I’m taking a ‘wildcard’ option today. The topic is ‘Biologics’ but I’m still on good old methotrexate and likely to remain so unless things get much, much worse, because biologics aren’t an option for mild RA in the UK. So there are two wildcard options – depression and advice. I don’t suffer from depression although a flare certainly makes me low and grumpy, so I’m going for advice.

What advice can I offer people who’ve just been diagnosed?  Well, off the top of my head, here goes. I’m sure there are many more sensible things I could have said if I’d been more organised about RA blog week – but this is me!

  1. DON’T PANIC!Perhaps I should display this in ‘large, friendly letters’ across my blog, a la Hitchhikers’ Guide. 
  2. Listen to your doctors and nurses, but don’t assume they know it all. (That’s for them to do and they usually do, but it’s not the case
  3. DON’T PANIC specifically about the side effects in medications. Most people don’t have any side effects. You might be lucky, you might not – but if you don’t try, you’ll never know. I’ve been lucky and had only the most minor of side effects, or none at all.
  4. Get advice from the RA community – local support groups, online support groups (such as Health Unlocked in the UK) and local or national charities e.g. NRAS in the UK, who I have found extremely helpful.
  5. Use what aids you need – and find out what aids are out there that can help you.
  6. Don’t be embarrassed to tell people about your RA and to use aids. Amanda John has written some terrific stuff over the years about dealing with embarrassment – or sometimes failing to do so.
  7. Find ways to deal with people – This can be HARD! Most people will be curious, many will ask stupid questions and even more will offer completely useless advice about their aunt’s cousin’s daughter’s dog who had RA, ate some honey and got better. It won’t help you to give a snappy answer, although it might feel good at the time. (I learnt this the hard way.) At the same time, try to find a quick way of explaining RA – true friends will listen to you harp on about for hours; the more acquaintance-level ones are understandably easily bored!
  8. Read blogs about RA – but remember everyone’s experience is different. Just because Carla, author of the terrific Carla’s Corner, has had to have multiple ops, doesn’t mean you will. Just because Wren has days when she can’t turn a page without pain doesn’t mean you will. But when you want support and advice the RA blogging community is a great place to be!
  9. Pace yourself! This is so hard! Fatigue is a big part of RA for a lot of people. ‘Pushing through it’ and ‘carrying on regardless’ DOES NOT WORK! You need to pace yourself. I frequently refuse to arrange to do something Sunday if I’m already busy Saturday – or vice versa, and I am pretty strict about keeping my work hours to a standard working week.
  10. Consider writing a blog. As you can tell from some of my more moaning efforts, it’s cathartic! It also puts you at the heart of the great RA blogging community, allows you to find new friends who really understand and empathise with what you’re going through, and allows you to moan at the blog sometimes if you feel you’re overdoing complaining to your loved ones!
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  1. Hi Polly: Great tips for all of us — not just the newly diagnosed folks. (I particularly love the DON’T PANIC! bit.) But you really opened my eyes to the fact that some people might read my experience with RA (which does include a lot of titanium) as frightening. We all come to RA with different life experiences and different perspectives (which I sometimes forget). Your advice is right on point, especially in that we need to absorb that which applies/works for us as individuals. I love that you’re in the RA Blog Week because we get to hear more from you! Hugs from across the pond.

  2. Hi Carla, Yes, it’s certainly ‘forcing’ me to blog. 🙂 Well OK, not forcing but it’s giving me topics to blog about and making me think, which is great. Just wish I’d had more time to think about it but work’s crazy!

    Sorry – maybe I shouldn’t have picked you as the scary example, but glad you’re taking it on the chin! What I should have said is,’Don’t worry, you might not need as many ops as Carla, and if you do, hey, look how bloomin’ fantastically she’s coping and feel inspired!’ 🙂

  3. 🙂 No apologies necessary whatsoever. (I’ve always been an overachiever now including, I guess, surgery …) And that can be scary for some people, but your point that my experience is not everyone’s experience is so true. We’re all different and RA affects us all differently (some of us are just more different than others … chuckle). Cheers.

  4. LOL – well said. (Funny, I hated Animal Farm but I use and abuse that quote all the time!) 🙂

  5. […] of my favorite cohorts is Pollyanna Penguin who lives in the UK and has an expectedly and wonderfully British perspective on life, RA and the […]

  6. Polly –

    Great advice. I agree with all of this. I also might add that Lene Andersen’s book Your Life Wits Rheumatoid Arthritis is a great read. It’s a perfect primer for the newly diagnosed because it hits on many topics in an easy to read style.

    It’s available on amazon definitely and probably other places.

  7. Thanks for the book recommendation – there are a few good ones about … not many I don’t think! 🙂 The name Lene rings a bell – does she blog too by any chance?

  8. Yes, she writes The Seated View and writes for other RA websites. She’s got a great attitude about life with RA.


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