Venus Williams and Sjögrens Syndrome: Is She a Bad Role Model for This Disease?

Last week I had the pleasure of watching Venus Williams play incredibly fantastic tennis in the US Open. It was exciting to see this world-class athlete, at 37 years old, show her competitors what a true champion looks like, in spite of having Sjögrens. It is uncanny to utter Venus Williams and Sjögrens Syndrome in the same sentence. Do I wonder how she can still be a top-level athlete and have Sjögrens Syndrome? You bet I do.

I am writing this post because many people have asked me, “Don’t you think Venus Williams is a bad role model for Sjögrens Syndrome?” And my answer is a resounding “NO”!  I don’t know how she does it. She must work and focus exceptionally hard to keep her dream alive — harder than she’s ever worked before.

I do understand why people make this comment, though. Those of us who have this disease know how difficult it is to explain to our family and friends why we can’t push ourselves a little harder to join in…or even get out of bed. So many people don’t believe us when we say that Sjögrens Syndrome is a debilitating disease. And when Venus can kick ass, at 37 years old, with Sjögrens, it doesn’t really help make our case. I get it.

But let’s not diminish Venus’ success at managing this disease to achieve her dreams, just because we can’t. After all, we really don’t know what she has to do to make it happen.

What we know about Venus Williams and Sjögrens Syndrome

The woman was a finely-tuned machine and world-class tennis player before she was diagnosed with Sjögrens. Here is a list of pertinent thoughts about what we know about Venus and Sjögrens.

  • In 2011, she had a bad year and she retired out of a match at the Australian Open, sat out many tournaments, and came back for Wimbledon unseeded (which had not happened in many years). At Wimbledon, she won her first round but retired before her second round receiving the diagnosis of Sjögrens Syndrome.
  • The media announced that Venus has Sjögrens and it is now permanently linked to her in most coverage. In 2011, the media placed a stronger emphasis on dry eye, dry mouth and fatigue. Sjögrens Syndrome gains world-wide recognition as an autoimmune disease because of Venus.
  • She was a world-class tennis player before Sjögrens. This disease prevented her from performing at her usual best for approximately 3 years. Clearly, she has created a disease management program for herself that works. Early in diagnosis, she claimed to change to a vegan lifestyle. I don’t know if this has continued.
  • Tennis is important enough to her that she has fought her way back to  playing in the 2017 US Open, at 37 years of age, moving to the semi-finals until Sloane Stephens won the match (and also won the US Open title). Much of the media coverage on Sjögrens now stresses fatigue and joint pain when associating the disease with Venus. (For examples, read this News Day and The Sportsman  articles). Venus has amplified two of the worst symptoms of Sjögrens that are often ignored in literature and even by doctors.

What We Don’t Know, But Can Surmise, About Venus and Sjögrens Syndrome

Although Venus is able to compete as a professional athlete, none of us are privy to what it takes for her to accomplish this. But for those of us with Sjögrens, we can make a few guesses. And these are mine:

  • Venus is as physically fit as a human can be (before Sjögrens and after). I do wonder if her physical strength before Sjögrens has helped her manage the disease better. I do know that when I exercise more heavily (and not push too far beyond my limits) that I feel much better.
  • Each person with Sjögrens has a different disease level and a unique medical and emotional journey. Perhaps Venus does not have as severe a “case” of Sjögrens as I do…or you do. I would also venture to say that her emotional power is equally strong to her physical power. Perhaps she can address her grief and emotional challenges of having Sjögrens differently than the average patient due to the experience of training her mind to focus on a demanding professional career.
  • Venus has plenty of money. She can pay for the best doctors in the world and seek out the newest and most advanced treatments. We do not know her drug regimen that may help support her tennis. Her drug regimen may have her in remission. Or perhaps she has received special permission from the tennis federation to use prednisone for support. We don’t know.
  • She can seek the counsel and care of other professionals such as nutritionists, chefs, masseuses, and yogis to keep her body deliciously fueled at all times and wonderfully stretched and massaged. She may also use yogic meditation to calm her system.
  • Before and after matches, she may go straight to bed. After a tournament, she may stay in bed with extra care for some time. We don’t know.
  • Perhaps Venus  is not sharing information with the world about what it takes to manage Sjögrens because it may give her competitors too much information.  Too much information can alter attitudes (including her own mental approach). For those of you who have played competitive sports, you know how much your mindset is part of the game!

Why Venus is A Good Role Model for Sjögrens Syndrome

It’s good to remember that each patient has their own experience with Sjögrens Syndrome — physically and emotionally. We can’t project our experience on to Venus and (obviously) we can’t adopt her experience. However, I do believe that “Venus Williams and Sjögrens Syndrome” has been a powerful combination to bring more recognition to the disease.  Even though she has not shown the world the most difficult aspects of the disease, more people in the world know of Sjögrens Syndrome and that it is an autoimmune disease.

Additionally, she is a good role model for any chronically ill person to remember to focus on what you love most. Venus does not want to be defined by her disease, she works hard to continue playing professional tennis, and the world sees her as a superior athlete (and not a patient of Sjögrens).

A Note to Venus

So Venus, welcome to the Sjögrens family. You have fought hard to manage this disease and still perform at a high-level doing what you love most.  You are still being defined by your amazing 23-year record of athletic achievements… and not by your illness.

But Venus, when you are finished competing, please do tell the world what it really took to manage your Sjögrens and continue playing. And please do talk to other patients so you understand the full spectrum of the disease. Finally, perhaps you can see your way clear to donating some winnings to fund more research on a new therapy to put patients in remission!  After all, watching you might confirm (to some people) that Sjögrens is a mere inconvenience; and it’s this misperception that limits the support and research funding the disease receives.

For those of us who don’t function at Venus’ level, you may want to try stimulating your Vagus Nerve. It’s a simple way to help calm your system. See if it helps you feel better!

4 Replies to “Venus Williams and Sjögrens Syndrome: Is She a Bad Role Model for This Disease?”

  1. Excellent blog! This is a question that people have asked me. How can you be an attorney practicing for 20 years in a very high pressure environment, with long hours and have Sjogrens? My son also had complications when he was born due to Sjogrens (neonatal lupus causing hydrocephalus requiring brain surgery). It is hard to answer but everyone has their path. Mine has been to work very hard but rest as much as I can on the weekends (sleeping until Noon on Saturday is one example)! I also live in the NY city area with access to top notch care. I also have a spouse that is incredibly supportive that gave up his career to support my profession and health and take care of my boys. I also have colleagues that understand that at times I have to take a break – work from home, rest, etc. I also have recently understood the benefits of exercise. I was always very resistant – I work too much and when home I have to recuperate and rest. 3 years ago I took back up tennis (ironically!) and realized that exercise actually helps. Also plaquenil has been very helpful for me as well as trying to not overdo the internet research etc of what can go wrong. I have ups and downs just like all of us Sjogrens sufferers but after 16 years being diagnosed, I try to keep it in perspective and remember how lucky I actually am

    1. Thank you for commenting and sharing your story! I am so happy for you that you have a husband, co-workers and friends that are supportive. At another time, I may reach out to you to ask how you have accomplished your communication with these people so that it has been successful for you…so many people don’t receive that support, and I am interested in knowing if there are approaches to communication that can help. Good for you for figuring out how to live successfully with Sjogrens!

    2. I agree, excellent post and thank you Janet. Atamesq, I’m curious. I live in the NYC area too. Would you mind saying which doctors you’ve found to be the most helpful? Thanks.

  2. Thank you for writing about Venus Williams.
    I would like to know what you do for exercise. I am most comfortable during water aerobics. My joints still hurt, but not as much as they do on land. I want to help my arms to look and feel stronger, but wrist pain keeps me from using weights in the water and on land. In advance, thank you for your suggestions.
    I pray Venus will some day give us her protocol
    for dealing with this dastardly disease and maintaining enough energy to get through a match!

What are your thoughts?