The inspiring story of a patient who wants to save others from the anguish she suffered
When Susan Hughes found out she had rheumatoid arthritis – or RA – she was scared and emotionally overwhelmed.
That was back in 2005. She was in almost constant pain and didn’t know anybody who had the disease or what it was. But since then she has risen up and taken ownership of her journey, she tells Pfizer’s Chief Medical Officer Dr. Freda Lewis-Hall during the latter’s recent visit to Sydney.
Susan also felt lonely and isolated. But she was not alone. About 400,000 Australians and 40,000 New Zealanders have RA – an autoimmune disorder that produces inflammatory joint symptoms throughout the body. It is different from the more common osteoarthritis, usually associated with wear and tear on joints, however is now thought to be caused by the body trying to fix damage to the joint.
Susan had a worrying six-week wait for her first appointment with a rheumatologist, a specialist doctor who treats RA and other autoimmune diseases and musculoskeletal conditions. When the day came, she found him to be “lovely” and reassuring. But she needed more.
Building a network for herself and others
Her first reach-out for help outside her family was to a friend who was a nurse, who taught her to self-administer her injections. It was a good experience and Susan very quickly learned to ask for support from people in the community.
Nine years after her diagnosis she left her small coastal town to live in Sydney and met former IT and internet executive Michael Gill, who also has RA. They found comfort in chatting about their experiences and eventually came up with the idea for a patient support group called Dragon Claw. The aim is to share information and real-world experiences to save newly diagnosed people from having to suffer the fear and frustration that they went through.
The “beloved” doctors are doing a great job, says Susan. “But they have to stay focused on what they are trained to do, and that’s to get us upright and out of pain.” But there are lots of “other bits and bobs that happen in our lives”.
Have the confidence to take control
She has come to realise that people see their rheumatologist for the equivalent of one day a year and it is up to them to look after themselves for the other 364 days. It’s essential for patients to get into the driver’s seat, says Susan. For her, that means taking things one day at a time and ensuring every day has a purpose.
Self-care is essential. So she swims every day and treats herself to a monthly remedial massage.
A good diet is a big part of it as well. “I make sure I avoid sugar. I make sure I have fresh fruit and veggies. I have had to become really responsible about what I eat.”
And there’s one more thing. Susan has built up a wonderful relationship with the empathetic couple who run a pharmacy close to her home. They are always ready to offer advice or just have a chat.
That’s an important part of her philosophy. “Develop a good partnership with clinicians and reach out into the community,” is her advice to anybody with a chronic illness.