An expectation that health can be restored
When we fall sick or are in pain, there is an expectation that health can be restored; that doctors and nurses or health workers will lead us to recovery. Expectations, however, can shift, and for people living with a chronic illness, managing the pain and maintaining a quality of life can become a real challenge.
Rachel Rossiter is a Senior Lecturer in Nursing who contributes to support services for people with chronic autoimmune conditions.
"Sometime there is little more medicine can do," says Rachel, "and you have to get on with living with an illness. I volunteer in the community giving talks at seminars run by a local support group. It does help to talk to other people who are in the same boat because it's very hard. Friends and family might not realise that although you are receiving medical treatment, you may not be able to resume the life you once lived."
The John Hunter Hospital houses the Auto Immune Resource and Research Centre. The Centre reaches out to people with Scleroderma, Lupus, Sjogren's and Raynaud's Phenomenon, who have perhaps undergone numerous tests over a lengthy period of time.
"We talk about the journey and how to manage with an illness," says Rachel. "Many people with a chronic physical illness are at increased risk of distress and mental health issues such as anxiety and depression."
The Resource Centre provides information about previously little-known diseases.
"The more information there is, the easier it is to cope," says Rachel. "We try to help people face life with a positive and hopeful attitude, and it does help people to know there is somewhere they can turn."
Rachel has participated in support and education days in Muswellbrook, Port Macquarie, the Central Coast and Newcastle, drawing from her clinical background in immunology and mental health.
"In the end, I'm passionate about helping people," she says. "Most nurses are. It's a privilege to speak people and find out about their lives and offer support during difficult times. Regular contact with a support group is an extremely valuable, yet at times overlooked, approach to coping with chronic illness. I think it makes a real difference to know you're not alone and that someone else understands."
Rachel has come and gone from Newcastle but says she is here to stay.
"It's unpaid work that I balance with my academic position, but it's extremely rewarding," she says.
Rachel's daughter and two small grandchildren are also happy she is staying in Newcastle. After all, a little help and support can make all the difference.