The debilitating illness suffered by Venus Williams
The Wimbledon finalist has learnt to live with her autoimmune disease. India Sturgis meets a fellow sufferer
On Saturday, when Venus Williams crashed out of the Wimbledon final in straight sets against Garbine Muguruza 7-5, 6-0, there was one question on everyone’s lips: what had happened to the seven-times Grand Slam champion to dent the score line so dramatically?
For years, it has been public knowledge that Williams has Sjögren’s syndrome, a debilitating autoimmune disease with a wide range of symptoms, from joint pain and dry mouth to swelling, numbness, burning eyes, digestive problems and fatigue. The disease, in which the body’s immune system attacks healthy tissue, is incurable, although its symptoms can be lessened through diet and medication.
Williams first announced she suffered from Sjögren’s in 2011 after it forced her to withdraw from that year’s US Open following a season peppered with withdrawals and injury. By then she’d had it for years, but had only recently received a diagnosis – her doctor had initially diagnosed her with exercise-induced asthma four years earlier. For a professional athlete, it can be the kiss of death for a sporting career.
“I had trouble with stamina. I had swelling and numbness and fatigue, which was really debilitating,” explained Williams, then 33, of the impact it had on her. “I just didn’t have any energy. You just feel beat up.”
While she hasn’t confirmed it, dodging post-match questions about injury and her performance in relation to Sjögren’s, many of her fans have been left wondering as to the part it might have played on Centre Court last weekend. Certainly there were moments when it looked as though she was struggling.
One who knows full well the devastating impact the condition can have on a life and sporting career is 30-year-old Emma Fletcher, from Burnley in Lancashire.
In 2008 the professional judo athlete was on top of the world. An under-20 Commonwealth champion, she’d been picked as a reserve for the Beijing Olympics when the illness took hold of her body. At first, Fletcher would wake up feeling inexplicably exhausted, but soon she was struggling to walk down the street without becoming out of breath and experiencing crushing joint pain. Over the next two years it affected her digestive system, attacking the gastrointestinal tract and mucosal surface, rich in immune system cells. She became unable to keep food down and was frequently sick.
“It’s nothing like normal tiredness,” says Fletcher, who is pleased the condition is receiving attention thanks to Williams. “It’s an overpowering fogginess in your head and your joints hurt. I feel pain in my fingers and lips, too. People say it causes a dry mouth and eyes, but it affects so much more than that. It was extremely tough. I lost my enjoyment of life. Not being able to do anything was a complete contrast from training six days a week and competing for Britain.” Fletcher went to doctors, but no one knew what was wrong with her. She was forced to give up judo, as she had such low energy and the weight was dropping off her. Things came to a head in 2011, when she went into hospital for an operation to remove a cyst from her ovary and her symptoms dramatically worsened. By that time, she’d dropped from over 12st to 7½st.
“I have a photograph on my phone from that time and I look like I was dying. It changed my life completely. I looked down and I could see all the bones in my body.” Sjögren’s syndrome is notoriously tricky to diagnose, because it shares so many symptoms with other common ailments. Many sufferers, like Williams and Fletcher, can experience years of fatigue and pain before realising the root of the problem. It wouldn’t be until 2013 that Fletcher found out she had Sjögren’s. Typically, the condition starts in those aged 40 to 60 and is more common in women. Researchers believe it is caused by a combination of genetic and environmental factors and viral or bacterial infections can prove triggers, which is why many find out they have it following operations or other illness.
While Sjögren’s has no cure, there are treatments that make symptoms more manageable. Anti-inflammatory drugs can reduce joint pain and muscle inflammation and artificial tears and saliva stimulants can ease dryness.
Venus Williams has learnt to manage hers by adapting her exercise regime and switching to a vegan diet, which typically involves eliminating all animal products and foods cooked above 118F. In the past, she has said of the diet: “Once I started, I fell in love with the concept of fuelling your body in the best way possible. Not only does it help me on the court, but I feel like I’m doing the right thing for me.”
Stress can also be a trigger – something that is obviously unavoidable during a Grand Slam final. Fletcher, who now works as a teacher at Belmont special needs educational school, has also gone vegan (“although I do eat chicken wings on occasion”) – a move that has helped her digest foods without feeling nauseous and vomiting. She avoids gluten, lactose and certain sugars and takes anti-nausea tablets, as well as multivitamins and cod liver oil. In the mornings, she has learnt her body copes best with a protein shake, rather than anything else, and for pain relief she relies on steroids and glucosamine supplements.
“It still impacts me on a daily basis. Sometimes you have a massive wave of fatigue and there is just nothing you can do about it. People think just because they can’t see it, I am better. But some days I will be sick at work or come home from work and just fall asleep on the sofa. I don’t even feel it come on.”
Despite the daily struggles, Fletcher has refused to let Sjögren’s prevent her from returning to the judo mat. Like Williams, she has made a successful return to sport. This year, she played in a mixed martial arts match for charity, having spent the previous eight weeks in training on her good days. She won all three rounds and was easily crowned the victor. “I didn’t feel pain when playing but it took me a full week to recover,” she says.
She credits her vegan diet with given her the strength to returning to competition and has even been scouted recently by the British wrestling squad. “It is still early days, though,” she laughs.
Like Williams, too, she learnt a way to push though the pain and realise her dreams. As the tennis champion said herself: “There’s only so much you can do, so I’ve definitely had to adjust a lot but I just see it as a challenge because in my life I’ve never been defeated by anything.”
‘It was extremely tough. I lost my enjoyment of life, I couldn’t do anything’