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What’s It Like To Be is a regular online column in which New Zealanders from all walks of life share first-hand experiences. Here, Paulette Crowley talks to Sandra Forsyth who lives with Sjögren’s syndrome, the second-most prevalent autoimmune condition behind rheumatoid arthritis affecting women.
I was living and working in Dubai – for most of my working life I was either as self-employed or in legal firms both her and overseas - back in 2010 when I became unwell. I got really, really skinny. Blood tests found I had a form of blood cancer, myelodysplasia. It was time to come back home.
I was incredibly tired, which doctors thought might stem from something other than the blood cancer. During the next year, I was diagnosed firstly with the autoimmune condition Sjögren’s syndrome, then another. They seem to hunt in packs; if you’ve got one autoimmune condition, you’ll probably get another.
Sjögren’s syndrome is the second-most prevalent autoimmune condition after rheumatoid arthritis that affects women. It affects multiple systems in the body but is mainly known for targeting the lubricating systems in the eyes and mouth. A lack of saliva means you get a really dry mouth, which causes oral devastation. Your teeth just corrode and fail, so you spend a lot of money at the dentist. I have spent thousands trying to save my teeth as I wouldn’t be able to tolerate dentures. It is incredibly painful, both physically and financially.
Many clinicians think Sjögren’s affects only the eyes and mouth. But it also causes pain and fatigue and targets other parts of the body, so it’s sometimes hard to get doctors to look beyond the eyes and mouth. Luckily, I’ve had the best clinicians throughout this time. Because of them I was diagnosed with autoimmune hepatitis, as Sjögren’s had attacked my liver (which may also affect my mortality). It attacked my bladder, so I have painful bladder syndrome, too. And so it goes on.
Like me, people with Sjögren’s may be prone to some blood cancers. Many of us are prescribed medication to dampen down the immune system, which come with adverse side effects. We may have other meds, too, but doctors are careful when prescribing long-term medications – it is a balancing act.
I manage most of my Sjögren’s symptoms through diet. What works for me is staying off starchy or wheat products, or any potentially inflammatory foods, especially simple sugars. I follow the Mediterranean diet, with good-quality proteins, like fish and lentils and lots of vegetables. If I eat meat it will be soft, like sausages or mince, because I’ve got a really sore mouth. I’m careful about my diet and exercise and swim most days, which has kept me alive, I think. Because I’m strict about how I look after myself and follow the advice of my medical practitioners, I have a full life. But I’m careful, I’m a good pacer.
Having a diagnosis like Sjögren’s comes with intense grief and loss – it strips away your sense of self, income, your hopes and dreams. If you’re unable to work, you suddenly become reliant on a benefit, which is a horror story really, because you’re living below the poverty line.
There’s a huge loss of human capital involved with people becoming unwell with autoimmune conditions. I’m amazed and despairing of the large number of young people with chronic conditions, who are unable to work and reliant on their parents for housing and support because when their parents pass away, they are going to be extremely vulnerable. So, there’s this huge cohort of people reliant on the state, which is not a good place to be.
When I was diagnosed, there wasn’t much support, so I became a peer supporter and advocate and have supported many people, mainly women, during the years. Peer support networks are amazing and are probably the No 1 thing anyone with a chronic condition should access. Arthritis NZ has been amazing.
It’s important that anyone with a health condition is an active participant in their own care. I have a designated notebook, recording my symptoms and questions to ask my doctor, noting what is discussed and the outcome. Health literacy and being an active participant in your own care are key to good outcomes.
No one really knows exactly what causes autoimmune conditions but they seem to run in families. My father had multiple sclerosis and several of my nieces and nephews have autoimmune conditions. Some people think chronic conditions are triggered by post-viral syndrome or physical or psychological trauma. Certainly, there are increasing numbers of people with long Covid.
There’s no cure for Sjögren’s syndrome – it’s just about managing the symptoms and being as healthy as you can. My brain still works but I would not be able to sustain a full day’s work, which is a pity because I would really love to be earning. Most of us are desperately poor because we haven’t worked in years – 15 in my case, since I was in my fifties.
Although there’s no remission, stem cell transplants have proven successful for some autoimmune conditions. I hope that one day, we’ll have access to stem cell transplants and Sjögren’s will be a thing of the past. The pain and fatigue are wearying, and it is hard at times, but I am proud and grateful to be able to support my peers and my community. I am grateful that I have a good, full life, even if it’s not the life I imagined.
