Friday, December 30, 2011

Sjogren's Reality


I read this story about Venus Williams's decision to withdraw from yet another tournament with some disappointment, yet not surprise.

Tennis great Venus Williams withdrew from the second-round match at the U.S. Open in August 2011 and announced that she had been recently diagnosed with Sjogren's syndrome. She has not competed in a tournament since and fans were getting ready to see her take to the courts in Auckland, New Zealand for the ASB Classic.
Unfortunately, the tournament website is announcing that she has dropped out due to health issues.

The article, written by fellow sjoggie Deborah Braconnier for Yahoo Sports, includes an interesting perspective from one who deals with the difficulties of autoimmune disease on a daily basis.

Unfortunately, the tournament website is announcing that she has dropped out due to health issues. As someone who suffers with Sjogren's as well as other autoimmune conditions, I can understand what she is dealing with and cannot say I am surprised with her withdrawal.Sjogren's is not something that a simple week's worth of pills will cure and eliminate. It is not a condition that has a cure. It is a complicated disease that has no magic medication. While there are medications that are used to treat the symptoms, not every medication works for every person.Treatment of autoimmune diseases becomes a game of sorts. Your physician will give you this medication to try along with that one and maybe they will work, maybe they won't. For many people suffering with autoimmune conditions, finding the right combination of medication can take years.

I have to say that as I read earlier quotes by Venus suggesting that she had plans for an immediate return to the competitive tennis circuit with some skepticism. Not because I wanted Venus to be unsuccessful, but because I have voiced some of the same goals early on in my disease: I AM going to return to my job. I WON'T let this disease rule my life. I WILL NOT give in! And, spite of my resolve, things just didn't turn out the way that I had hoped.

I don't want to insinuate that I have capitulated to all the challenges that Sjogren's and autoimmune disease has set before me, but I have to admit that my life has changed in ways that I never could have imagined as I was making those bold proclamations.

I did have to quit my job. I did have to make drastic reductions in my hobbies and interests and activities. I did have to allow Sjogren's to limit me in certain respects.

Venus, I hope that you will not have to be making the same concessions in your life that I have as a result of your autoimmune disease. I - and all of your fans - will understand if you find that Sjogren's has changed your game permanently. But also know that even though things may have changed - life goes on. Not better, not worse.........just differently. That's all.

Every sjoggie has come to the same conclusion.


LisaMarie said...

I keep saying that I'm going to run another 1/2 marathon in May. Still my goal. But it is hard to train for this. Some days, I have energy to run 3 miles. Other days, I have no energy. Some days, the cold air feels like it will cause pleurisy to set in if I run (happens every winter). I will run and train as I can. And I may succeed in training to come upon race day and sleep right through it. And I feel that I'm fortunate in that my hardest issues with the disease is dealing with sleep...either insomnia or sleep 12 hours and still feel tired. It is hard to control. Plaquenil has been extremely helpful with the rest so far.

Miki said...

Well put Julia!

Esther said...

Reality bites.

Anonymous said...

There is a life Before, and a live After.
But the live after can still be a great live, with fun, and love and so much more !!
But we have to accept it first.

Anonymous said...

I was recently diagnosed. I don't have severe symptoms. That is probably why I feel very optimistic and want to believe that I will not be the victim of my illness. I have enjoyed a very active life, and without knowing I have suffered fatigue, dried eyes, dried mouth, stiffness, etc. It was just life; I lived it without feeling sick. I wonder if I will start “feeling sick” now that I know that it is not life, that it is Sjogrens.