I’m not a tennis fan and typically get quickly bored watching the game. But over the past few weeks, Serena Williams has grabbed my attention. I’m fascinated by her energy, facial expressions and her game.
FYI – I’ve been following the human interest story of Venus and her younger sister, Serena, over the years. Growing up in Compton, CA, they became elite athletes at a young age and have competed into their 30’s at the highest level of the sport. They seem to exude grace and class.
So, I was sad to read that Venus had been diagnosed with the autoimmune disease, Sjogren’s a few years ago Like many, I figured this was the end of her career, at least as a top athlete. Silly me.
She showed us how wrong we were the other night when she played her sister, Serena, in what was billed as a once-in-a-lifetime experience. I won’t go into the details of the nail biting closer . Yes, Serena was playing to win a Grand Slam. But I’m more interested in Venus’s accomplishment and what it showed me about my own biases.
I’m not talking about race or gender but about illness bias.
As Serena and Venus first walked out onto the court for the opening match, I commented to my husband, “Venus isn’t well. Look how she’s hunched over — and how tired her face looks.” Huh? I’d hadn’t seen her play in a few years yet I felt confident in my assumption.
Why? Because I’d read that she has a debilitating chronic illness. I’ve also read her own occasional comments about Sjogren’s and how tired she’s been. I thought I knew what she was experiencing.
But my thinking was based on what I thought I saw. Before she even took a swing, I underestimated her because I assumed she was playing hampered by illness. But however tired and weak she might feel at times or even last night, she played like a super star. After barely winning the match, Serena told a reporter and the crowd that this was her toughest game yet and that Venus is her most difficult competition. She didn’t say, ‘on her good days’ or ‘when she’s up to it’. Venus embodies beauty, strength and working with a chronic illness!
So here’s my take on what this means to the rest of us poor slobs who don’t play at elite levels but are just trying to get by.
Knowing that this highly talented competitor lives with an illness, I made assumptions that completely underestimated her capacity. My last post was on ‘disclosure’ and I believe that there are times it is in our best interest. But it’s a complicated issue because once people know that you have any kind of ‘handicap’, something that could get in your way, it’s hard for them not to layer that notion onto whatever you do.
Bottom line? There’s no right or wrong thing to do around disclosing illness but we get into trouble when the biases that lead to incorrect assumptions are ignored.
Ellen says
This question is wrapped up in the question of who should you tell and when. The people I know well
have learned to take their cue from me and to believe and accept it if I say I can do a marathon shopping trip or a long walk or work a long stretch of days. They also don’t judge if I say I’m going to go take a second nap today. But I won’t say everyone I know is like that I have a sister who even after 20 years thinks I baby myself and I just need to push a little harder and not give into the symptoms (if there even real). I’m now in a job where I work with different people a lot and I don’t tell any of them. I see them look at the sores on my arms from my lupus rash and I wonder what they are thinking but I have just learned to not care and not feel like I need to explain. I rarely tell anyone who hasn’t known me for awhile because they tend to be overly sympathetic and want to “baby me” or “cut me a break” on the work load. Even though my job allows me to set my own hours they want to say when I should give it up for the day. I find that if they know me well enough they know I will take off when I have to. But I also don’t lie about why I took a day off. I’ll just say I slept and did nothing. I realize not everyone has this flexible of a job but it was a great relief to me when I got it.
I would have to say that once a person knows you have a chronic disease their opinion of you changes. If you are fighting to have as full of a life as possible I think most people respect you for that. But I also think they are expecting you to use your illness as an excuse.
Pam Fitzgibbon says
I have a friend who also has that illness. She was a flight attendant with me for 30 years. She struggles with it still but lives a normal life. Since I have FMS and migraines, we would like to travel together. Because we understand each other’s limits.
What I think is so sad for people with “hidden autoimmune” disorders is that most people figure since you are out in public, you must be doing ok. Can’t be that bad or else you’d be home in bed. Yeah, right!!
And since you are looking like you are doing ok, then you must not need help.
I have fought this kind of prejudice for the last 25 years. And the worse comes from my own family.
Just saying……you never know what it might have taken for someone to show up!!
Rosalind says
Living a ‘normal’ life is what drives most of us, doesn’t it? Whatever that may mean. And, so true about the hidden versus what is visible. Though each has it’s own set of challenges. Thank you for sharing.
Rosalind says
Thanks so much for sharing this. I think we all benefit from hearing how others move through this, don’t you?