• Shruti

Sunday Breakfast Club: Lady Gaga and the Awareness Issue

During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and catching up on our lives (or lack thereof) over bagels and coffee, before the conversations would inevitably tangent off onto random topics. I miss those chats – and the insights into my friends I’d gain through them.  So I thought I’d try to restart something along those lines on my blog. A chance to hear more from my readers… at first, I was trying to decide if I wanted something consistent: quotes/sayings, song lyrics, random current or pop culture events…. But I think it will be more fun, more free to mix it up. Just whatever I’m dwelling on at the moment. Hope you all have as much fun with it as I do.

So the Twitterverse, Bloggerverse, Facebookverse and probably any other major social network are in a frenzy with the news that Lady Gaga has been tested for lupus. Tested, mind you, not diagnosed with. There was an article on CNN which quoted this original article … here is what the Lupus Alliance released in response to the rumors.

I think the Lupus Alliance makes a good point about the issue of what information about lupus ends up being disseminated in such situations. It is definitely a significant problem. However, that isn’t the issue I would to discuss today. Instead I would like to focus on the tone of the chatter.

Obviously, when any major celebrity mentions lupus we are going to get all riled up. We all know that the more awareness there is in the community, the easier our lives will be. Besides, existed support and understanding aside, it’s a major illness that we suffer from, and it would just generally be nice if people knew it. Still, as I read these tweets I started getting a little worried about their implications. I mean, are we so excited that someone famous might be able to get the word out that we have forgotten how trying this illness is?

I, for one, hope Lady Gaga DOESN’T have lupus, regardless of how much awareness she can bring to the disease… and, I’m sure, many authors of said tweets would agree given a chance to explain themselves. It’s not like lupus doesn’t have a set of celebrities attached to it, but nobody on the lines of Lady Gaga. Still, the point that these days celebrities are one of the best ways to get awareness out for a disease is valid. Lou Gehrig for ALS and Michael J Fox for Parkinson’s are prime examples.

All the same, I’m not sure we’re being fair here. I know celebrities have a limited amount of privacy, but does that mean they’ve totally given up their right to it? Is it fair to demand that they release protected medical information in the name of the cause? I mean, I’m not even willing to provide my name out here in the community for fear of repercussions, so I can see why they wouldn’t want the entire world to know.

How can we do this without wishing the disease on anyone in the first place?

How do we balance the need for increased awareness (especially of the level which can only be gained with celebrity help) and still respect their right to privacy?

#autoimmunedisease #systemiclupuserythematosus #autoimmune #spoonie #activism #fibromyalgia #SLE #fibro #LadyGaga #lupus #awareness #autoimmuneillness

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During the two years that I was studying for my masters degree, I would meet two of my closest friends every Sunday morning at a local coffee shop. We’d spend an hour chatting, venting, gossiping, and

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