Arthritis New Zealand Advocate Sandra Forsyth spoke with Stuff’s Rachel Thomas about how she navigates through life with an invisible illness – Sjogren’s syndrome and continues to live her best life.
Up until her 50s, Sandra Forsyth was a model. Now 65, Forsyth has the same elegance and svelte figure that many woman half her age would long for. “Do I look like there’s something wrong with me? I look shit hot.
“I’m actually very sick. That’s the profound thing about conditions like this.” Under her heavy fringe, her eyes are red. Her teeth are yellow and decayed.
These are really the only visual signs of Sjogren’s syndrome – pronounced “show-grins”. It occurs when the body’s immune system starts killing off moisture-producing cells – usually the ones that produce saliva and tears.
We need moisture for “every aspect of your body’s mechanics”, Forsyth says, which means Sjogren’s can affect the nerves, skin, joints, lungs, kidneys, and thyroid gland.
Forsyth also lives with myelodysplasia – a blood disorder which can morph into leukaemia, lymphoma “or fab things like that”.
In 2011, when she was diagnosed with Sjogren’s, she couldn’t find any support available. “I looked for support and asked Fairfax Media to interview me for the Kapiti paper, the Observer, and that drew a response of about 35 people.”
She was approached by Arthritis NZ and became involved with its Support for Newly Diagnosed (SUP) service.
Then she became involved with WellMe – a support community designed to help people living with a collection of chronic illnesses.
Now Forsyth works to raise the profile of Sjogren’s, ME and fibromyalgia in the media and online, and connects people with support groups, writes for specialist publications about the conditions and hosts a coastal health radio show.
“I help others so they don’t have to go through what I did. The social isolation of having an invisible chronic illness is huge and intense, as is the grief process.”
Naturally, people grieve for their past life and their former physicality and selves, Forsyth says.
For someone who had worked for former governor-general Anand Satyanand, former prime minister Geoffrey Palmer and major law firms here and overseas, it took some getting used to.
“You become very authentic very quickly, and your shit gets burned off you pretty fast.
“You’ve got to learn the language of your disease, the new landscape – which is chronic illness, then find your best life.
“It’s very important you access help and that’s what WellMe exists for and that’s what I exist for, that’s my purpose now.”
She’s always wanted to live by the sea and write, and now she does.
Her life is full and robust thanks to advocacy, she says. “People ring me up and cry because I’ve just described their life. I find that hugely satisfying.
“People have to know there’s a life despite being unwell. You can have your best life.
“When I look at the members of our support groups I don’t see sick people – I see that resilience and incredible inner strength.”
