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Posted on 8. September 2011

Putting a Face On an Invisible Disease

by Kris McFalls

Those of us with an invisible, chronic disease would not wish our disease on anyone - not even on those that refuse to believe our disease exists. Yet when a well-known athlete or actress goes public with the same disease, such as Venus Williams did when she recently disclosed her struggles with the autoimmune disease Sjogren's syndrome, we secretly celebrate.

We are not celebrating that someone else has our disease. We are just grateful that someone with such stature and strength goes public after they are given the same diagnosis. Thanks to Venus' disclosure, Sjogren's went from being an invisible disease to one commanding the world's attention. And whether she likes it or not, Venus has become the face of Sjogren's syndrome overnight.

Social media groups are abuzz, claiming Venus as one of their own. People everywhere now want to know more about this peculiar, invisible disease that forced the superstar out of one of the world's most premier sporting events.  As doctors conduct prime-time interviews, educating the public on the symptoms of Sjogren's, those of us suffering from the same disease can now point to our television sets and say, "Look, I have that same disease. See it is real!" It's almost as if Venus' public disclosures have validated our own personal struggles.

Similar to what Kelly Clardy stated in an IG Living blog titled, Disease Envy, I must admit, I am quite jealous of the attention Venus has gotten and will continue to get for her disease, simply because of her notoriety. Many of us can only dream of the high-quality care and understanding she will no doubt get simply because of who she is. Regardless, as we can all attest, having an invisible disease can be quite isolating and frustrating, even for a celebrity. And as many of us know all too well, having a disease with no cure and no clear path of treatment is the ultimate societal equalizer.

Envy aside, having a celebrity with the same disease brings us all hope. Many celebrities use their notoriety to influence research and bring attention to their causes. They can instantaneously transform an obscure and poorly understood disease into one that is a common household name. Who doesn't know that Michael J. Fox has Parkinson's disease or that the mighty Yankee Lou Gehrig was brought down by amyotrophic lateral sclerosis (ALS)? What is sad is the fact that we have to wait for someone that is rich and famous to have our disease before any attention is paid to it.

While we cannot all be superstar athletes, I think even Venus would agree that we all deserve to have our disease validated. So, yes, we celebrate and we hope because someone famous had the courage to go public with her own struggles with a chronic disease.


Comments (2) -

4:52 PM on Friday, September 09, 2011

Such a great blog Kris. It really rings true. My mother's disease was/is not very well known. I have always said that until a celebrity comes down with a disease, no one will pay much attention to it. Look what Michael J. Fox has done for MS and Magic Johnson for AIDS. It isn't that we want anyone to have the illness, but we just want the illness to have the research and recognition it needs to find a cure...for everyone.

5:03 PM on Sunday, September 11, 2011

Exhausted and in pain all the time. "Yhea, right," multitudes say to me. "You don't look sick." Wow, how uninformed. Now that this superstar and very talented athlete has the same symptoms I do, even by being a different autoimmune process, I can finally divert those sceptics that claim I am lazy to the national attention everone with autoimmune diseases deal with everyday -- doubt by others of how real we hurt. An athlete, in top physical condition and training for the rigors of compitition, who has to pull out a Grand Slam event by suffering in the same fashion as others is a symbolic gesture yelling, "It is real!"  

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