Probably since I was about 20, but I have never had any positive blood markers so it took about 6 years and two operations before I was properly diagnosed (through ultrasound and MRI scanning of my joints).
What advice would you give to someone who has just been diagnosed with RA?
Don’t panic! Also, do whatever you can so you can accept it. It cannot take over your life unless you let it – see it as part of who you are, like having brown hair or being short, and you’ll find it much easier to manage it.
I’m also a big advocate for reading up on your condition. Don’t scare yourself by reading every whacko online article out there but use credible information so you understand the treatment options and can explain about your condition to others.
Do you use any mobility aids?
I use splints for my wrists and a crutch occasionally when my hip plays up but I try to do without.
How has living with RA helped to improve your life?
It’s made me braver. Until recently I was working in a great high-profile government job but struggling to manage that and the arthritis. I was working on so many interesting health issues but at the same time completely failing to look after my own health and suffering flare after flare.
I realised I had to stop fighting against the arthritis and find a career that better fitted by life. Now I’m training as a clinical nutritionist and doing freelance work. I also write a blog about cooking with arthritis and have never been more fulfilled. If it hadn’t been for the illness, I think I would have felt stuck on the treadmill and maybe never discovered another career.
Do you have any visible signs of RA?
I move a little stiffly sometimes but for the most part my arthritis isn’t really visible. Some little keyhole scars on my right hip from surgery to reshape the joint and remove the bursa and I’m about to have some little holes on both sides of my jaw from an operation to sort that out so I can eat pizza and cookies again! Yay!
Can you please describe some of your favorite coping strategies for living with RA?
My husband – seriously he is constantly brilliant and has been incredibly supportive from when I was just a whining girlfriend with random joint pains through to helping me get a proper diagnosis and treatment. He doesn’t ‘molly-coddle’ me (sorry but it’s a brilliant English expression) but he reminds me not to overdo it or try to fight it when I’m flaring.
I’ve learnt it’s better to be honest about how you are feeling with family and friends (little and often rather than a big wave of emotion).
Can you please describe your current medical (traditional and alternative) treatments?
Humira, sulfasalzine and methotrexate – plus a good handful of painkillers.
I find taking plenty of regular exercise and a healthy diet helps too.
Is there anything else about yourself that you would like to share?
I’d love to share my website www.cookingwitharthur.com with everyone. It’s full of healthy, tasty recipes that are easy to cook with arthritis but I’d really value feedback and comments from all those brilliant RA’ers out there. I want it to be a helpful resource so never again does someone with a flare have to live off breakfast cereal (please tell me other people do that too…).