John and Winsome Stephenson at Wollongong's Belmore Basin. Picture: KIRK GILMOUR
Winsome Stephenson doesn't want sympathy, she wants validation; for people to understand chronic fatigue syndrome and not dismiss it as a psychological illness.
Despite the challenges life has thrown her, Stephenson remains positive and focuses on helping others. "This household is a very positive family and we don't give into it," she says.
Stephenson has battled chronic fatigue syndrome (CFS) since 1986 and was struck another blow in 1996 when her daughter Kerri was diagnosed with the same condition at the age of 20.
Stephenson admits she is feeling run down on the day we speak - she celebrated her 69th birthday the day before. "If you overdo it one day you can have days of a relapse. It's a severe and debilitating, relapsing and remitting physical illness," Stephenson explains.
"You feel like you've got a severe dose of the flu all the time, with pain and swollen glands and headaches."
Before her diagnosis, Stephenson worked as a primary school teacher. Her daughter Kerri had just started a degree in exercise science at the University of Wollongong when she was struck by CFS.
Stephenson says her daughter's condition factors highly on the CFS disability scale with severe symptoms. For a period, she couldn't sit or stand, let alone even write the letter K for Kerri, and had to learn to speak and eat again.
Although the exact cause of CFS is unknown, there are several trigger illnesses which are believed to occur before a diagnosis. Stephenson had suffered a bout
of viral pneumonia and her daughter had glandular fever.
There is no cure for CFS. There are medications to treat symptoms but bad reactions are common.
It's not the symptoms that hurt Stephenson most, however, it's the misunderstanding within the community.
"Comments from people to 'throw away the rubbish and get over it' break your heart," Stephenson sighs.
She looks forward to the day a blood test is developed to define CFS. "It would be brilliant, it would be so validating."
Stephenson and her husband John moved from Batemans Bay to Wollongong in 1996 to help their daughter and they now co-ordinate the Wollongong ME/CFS/FM Support Group for sufferers of myalgic encephalopathy, chronic fatigue syndrome and fibromyalgia.
"We're not a pity party in our group and we laugh a lot - laughter is the best medicine. I get great enjoyment in being able to help people," Stephenson says.
In addition to fatigue, CFS symptoms include dysfunctional sleep, pain and cognitive, immune and autonomic manifestations. Stephenson is unable to leave the house on her own and uses a wheelchair on big outings. Her husband John does the grocery shopping.
"One of the worst things about the illness is the loss of your social life and your life with your partner and family," Stephenson says.
For more details about the support group go to www.mecfsfmwollongong.org.