I’d always thought I was well acquainted with arthritis, as both my sister and my mum live with pretty nasty forms of it.
But it wasn’t until I interviewed others with the disease – people I didn’t know – for the charity Arthritis Care that I really started to grasp what it’s like for my mum and sister.
It sounds like I have a distant, dutiful-phone-calls-three-times-a-year type relationship with my family, right? Actually, the opposite is true – we speak every day. If anything we care too much, regularly working ourselves into irrational frenzies of worry about each other. It’s exhausting!
The thing is, as I discovered through my interviews, people find it hard to talk to their families about their arthritis – the unrelenting pain, the feelings of hopelessness and despair. They don’t want to burden the people they love.
So they suffer quietly, get depressed, feel like they’re going a bit mad because does anyone really understand what it’s like to wake up every morning and be in too much pain to move?
Or, like Rowena (pictured above on the right), they ring the Arthritis Care helpline and have a good rant. Rowena is 35 and has ankylosing spondylitis like my sister. “I’ll be stomping round the house getting angry,” she told me. “The helpline people know things are tough and they just sit back and listen. I can’t talk to my family like that.”
I wish I’d known about that helpline earlier – I’m sure it could have helped my family. And I wish I’d known about Arthritis Care’s self-management workshops. These are led by volunteers like Jennylyn, who was diagnosed with rheumatoid arthritis at 31. She didn’t get the right treatment soon enough and by 35 she’d had both her knees replaced.
When she finally emerged from ‘years of hell’, Jennylyn ‘felt lucky’ and ‘wanted to give something back.’ She became a volunteer trainer, teaching others how to live with arthritis. Since 2008 Jennylyn has given hope to hundreds of arthritis sufferers. I think she’s amazing.
Remember the blue-and-blonde-haired actress who flew into the Olympic stadium in her wheelchair during the 2012 Paralympics opening ceremony? That’s Nickie. Now 36, she developed chronic juvenile arthritis aged four. She’s been using a wheelchair since her early teens.
Nickie is helping Arthritis Care raise awareness. “People still have the wrong idea about arthritis,” she told me during our Skype interview. “You hear, ‘My nan gets it in her thumb when it rains but she still plays tennis.’ Once I told someone I had arthritis and she said, ‘Oh, is that all?’”
Even though Nickie lives with pain every day, she’s not sure she’d change anything. “Arthritis is an arse because it’s painful. But without it, I wouldn’t have had the life I’ve had. I definitely wouldn’t have flown through the Olympic stadium! You just have to go with it.”
Thanks to the ladies I’ve described above, I’m trying to be softer on my sister when she’s unaccountably grumpy. I’m toning down my tuts when my mum says she’s too tired to go swimming. I hope their stories teach others as much as they’ve taught me. Rowena, Jennylyn and Nickie – I thank you!