Venus Williams wore a lacy white short-sleeve top, blue jeans and sandals. Her hair fell in soft curls past her shoulders, her dangly silver-dollar-size earrings shimmered in the light. In the restaurant of the Upper East Side hotel where Williams is staying, she could have passed for a model headed to the Hamptons for the Labor Day weekend rather than a tennis superstar already plotting her return despite a chronic autoimmune disease.
Sjogren’s syndrome, the disease, is difficult to diagnose because those who have it often appear the picture of health even when they do not have the energy to sit for a portrait.
“The fatigue is hard to explain unless you have it,” Williams said Thursday morning. “Some mornings I feel really sick, like when you don’t get a lot of sleep or you have a flu or cold. I always have some level of tiredness. And the more I tried to push through it, the tougher it got.”
Williams, 31, has won 10 tournaments in the last four years despite feeling fatigued and having difficulty breathing, symptoms she knows now are associated with Sjogren’s.
For 78 minutes Monday in a 6-4, 6-3 victory against Vesna Dolonts, Williams performed so well she was painted as a contender to win her third United States Open title.
But Williams’s energy and fingers-crossed optimism ran out Wednesday when she practiced with her hitting partner, David Witt, before her scheduled second-round match against Sabine Lisicki and was so tired afterward she could not raise her serving arm. She withdrew from the tournament, and though it marked the end of her 13th Open, Williams said she had more competitive matches in her.
“This is all new for me,” she said. “I played a match at the Open, so I feel positive I can come back.” She added, “I’ve been told it’s going to take three to six months for all the medication to sink in.”
There is a genetic component to Sjogren’s syndrome, as Williams’s younger sister Serena is well aware.
“I don’t have the same symptoms she’s had in the past,” Serena said Thursday after advancing to the third round with a 6-0, 6-1 victory against Michaella Krajicek. “Hopefully it will be different.”
Serena Williams said her sister seemed changed for the better since receiving the diagnosis.
“I think she’s really happy now that she knows what it is after all this time,” she said. “I think, if anything, it’s going to help her now to treat it and go forward.”
Venus Williams has won seven Grand Slam singles titles — including two Opens — but none since 2008. In 2007, she received a diagnosis of exercise-induced asthma, but the medication she was prescribed did not alleviate her distress.
In retrospect, Williams said, she was probably experiencing the first symptoms of Sjogren’s, in which white blood cells multiply so fast they clog moisture-producing glands.
“I’d go to doctors, but I never got any answers, so there was nothing I could do but keep going,” Williams said. “It was frustrating, always being in the dark and not having anything to help me but my own will.”
Dr. Frederick Vivino, a clinical associate professor at the University of Pennsylvania School of Medicine and director of the Penn Sjogren’s Syndrome Center, described the disease as “a major women’s health problem that’s largely underdiagnosed and undertreated.”
“It causes so many symptoms, sometimes it’s hard for a specialist to get the big picture,” he said. “And most of the patients do not look like they have a chronic illness. Because they look a lot better than they feel, some of our patients have been told they’re hypochondriacs or they’re depressed or they are experiencing these symptoms due to menopause, and they just accept that. That’s why people go years before being treated for autoimmune diseases.”
Williams said she received the diagnosis in August. It was a relief, she added, to know there was an explanation for her swollen hands, chronic fatigue and misshapen joints.
“You almost get used to having all these symptoms,” she said. “You tell yourself to shake it off. Just keep going. Over time, you do start to wonder what’s happening and if you’re going crazy.”
Williams added: “Looking back, it’s affected my career in a huge way. I’ve been playing a lot of matches with a half a deck.”
As she debated what to do Wednesday and went back and forth with herself on why she should bow out and why she ought to soldier on, Williams imagined herself playing Lisicki with a racket that felt like concrete in her hand.
“I have to be up for every match,” she said, “because people come out against me with nothing to lose.”
To be competitive with Lisicki, Williams knew she would have to be at her best. She felt nearer to her worst, which made the withdrawal, in the end, the obvious answer.
One of the best moments in her match against Dolonts, the 91st-ranked player, was also one of her more demoralizing. It came early in the first set, when she hit a backhand winner down the line after running across the court.
The shot was vintage Williams, recalling the early 2000s when there never seemed to be a ball that was out of her reach. What nobody but Williams knew was how much effort went into producing her old magic.
“That shot took a lot out of my sails,” she said. “I was 50 percent gone. I remember telling myself: Just let me get through this. Just be tough.”
She added, “A lot of times I’ve had to pretend I felt good when I felt terrible.”
Of the roughly four million Americans with Sjogren’s, 9 in 10 are women. There is no cure for the disease, but it can be treated and controlled. By lending her face to the disease, Williams hopes she will help others who have the disease feel less scared and isolated.
“I didn’t even know if what I was feeling was the right thing to feel,” Williams said. “I don’t know anyone else with the disease. When I got the diagnosis, I was like, S-j- ... how do you say it?”
Vivino, of Penn, said: “She’s been very gracious in coming out of the closet and revealing her disease to people. She’s going to help alleviate the suffering for millions of people down the road.”
Williams’s goal, she said, is to return to competitive play next year, maybe sooner.
“I’m going to do the best I can,” she said.
