Women’s Insights into Rheumatoid Arthritis

The 12 Australian women who stepped forward to break the silence for the Women’s Insights into Rheumatoid Arthritis book are:

• Renee Lang, aged 21, Adelaide, SA as told to the Minister for Early Childhood Education, Childcare and Youth and Minister for Sport, The Hon Kate Ellis MP, Member for Adelaide, SA
• Rebecca Henderson, aged 30, Griffith, NSW as told to the Nationals Chief Whip, Kay Hull MP, Member for Riverina, NSW
• Hayley Foyster, aged 33, Kingscliff, Queensland as told to the Minister for Ageing, The Hon Justine Elliot MP, Member for Richmond, NSW
• Suzie May, aged 35, Perth, WA as told to the Deputy Leader of the Opposition and Shadow Minister for Foreign Affairs, The Hon Julie Bishop MP, Member for Curtin, WA
• Amanda Glynn, aged 39, Perth, WA as told to the Australian Greens Whip, Senator Rachel Siewert, Senator for WA
• Despina Gonis, aged 48, Adelaide, SA as told to the Minister for Climate Change and Water, Senator the Hon Penny Wong, Senator for SA
• Christine O’Brien, aged 49, Melbourne, Victoria as told to the Minister for Families, Housing, Community Services and Indigenous Affairs, The Hon Jenny Macklin MP, Member for Heidelberg, Victoria
• Sabine Gunton, aged 54, Sydney, NSW as told to the Shadow Minister for Seniors, The Hon Bronwyn Bishop MP, Member for Mackellar, NSW
• Ann Goody, aged 56, Cooktown, Queensland as told to Senator Sue Boyce, Senator for Queensland
• Elleke Penny, aged 59, Melbourne, Victoria as told to the Deputy Prime Minister, Minister for Employment and Workplace Relations, Minister for Education and Minister for Social Inclusion, The Hon Julia Gillard MP, Member for Lalor, Victoria
• Judith Nguyen, aged 63, Sydney, NSW as told to the Minister for Housing and Minister for the Status of Women, The Hon Tanya Plibersek MP, Member for Sydney, NSW
• Barbara Dutton, aged 74, Burnie, Tasmania as told to Senator Carol Brown, Senator for Tasmania.

The book will be distributed to rheumatologists as an educational tool for their RA patients and can be downloaded from the Arthritis Australia website www.arthritisaustralia.com.au. Further copies will be distributed to all public/municipal libraries across Australia.

What these women want you to know:

RA does not discriminate:

“I’m only 21 and while marriage and children are a long way off, what scares me is having to go off medication during pregnancy. Even in remission, that would terrify me. Then there’s caring for the baby. What happens if you can’t walk or are in the middle of a flare?” Renee Lang

RA is a serious disease:

“My joints weren’t disfigured. I didn’t look like a sick person and I know some people dismissed me as a hypochondriac because there was no physical sign there was anything wrong. Ann Goody

The impact RA has on the individual and their life:

“With RA no matter how excruciating the pain, you learn to live with it. It’s the fatigue that knocks you rotten. You can have a beautiful night’s sleep and wake up feeling like you’ve been hit by a bus. I’d be so tired some days that I’d come home from work, look at the breakfast dishes and just want to cry.” Amanda Glynn

The importance of early diagnosis and your rheumatologist:

“Doctors and pediatricians put it down to growing pains. But it was much more than that. When I walked my knees seriously hurt and often they’d lock so I couldn’t move at all. It was also agony to go down steps. My knees couldn’t deal with the downward pressure. Even if it was just stepping down off a kerb, my knees would give way under me and I’d end up in the gutter.” Hayley Foyster

“The biggest mistake I made with my rheumatologist was not being honest. Like many women, I believed in a stiff upper lip. When my doctor asked how I was, I wouldn’t let on I’d been in such agony, even though I’d virtually crawled from my car to her office. Instead I pretended the pain wasn’t so bad. I didn’t want her to think I was a complainer.” Sabine Gunton