|Teens With Lupus||
This blog post might take a different turn than you're expecting. I'm not spewing with "happiness" that these famous women have, or possibly have lupus. I am saddened to know that these women might be dealing with something devastating while they are still so young; that they are going to always fight lupus and fatigue and pain in some aspect while trying to carry out the busy lives they lead. I've seen so many people saying that they are happy that these women have lupus, that they will be great advocates for us.
Here is what I've had to say:
Selena hasn't even confirmed herself yet that she has it and everyone's already "I'm kind of glad she has it because she's such a big celebrity". Like what? Some people in the lupus community forget that health is no one else's business. They wouldn't tell someone in one of our support groups that they should come out about it. People post all the time that they're keeping their disease from their family and friends, and that's fine, but when a celeb has health problems suddenly we have every right to know all aspects of them. I'm sort of upset because of the Selena thing in general. If she does in fact have lupus, it should have come from her not "a source close to Selena". If she does have it someone pretty much sold her out. The article I read said she's been hiding it for years so obviously she wasn't wanting to share it with anyone. And if that's the case now she's going to have everyone bothering her to be our superstar which isn't fair. We all chose to be advocates, but not everyone with lupus wants to be and that's fine. I don't think people should be living in complete secrecy with it but they don't need to be someone talking about it all the time
I have had lupus for almost 5 years (diagnosed, undiagnosed most of my life). And I feel nothing but sad when I hear about other people getting it in the prime of their lives, interrupting their work schedules and bringing down their well being. I expect nothing from them. Its not their job to be a voice for me. I'm happy that Nick Cannon and Toni Braxton are open and educate about it. Nick did a whole series on youtube and has done MANY interviews talking about his lupus and he works with the LFA. Same with Toni.
Kristen Johnston is being open about it, and people have ATTACKED her verbally online for not being the lupus superstar they want when she is still getting better and just found out she has lupus. She didn't even need to share that. Neither does Selena. I CHOOSE to advocate for my disease. It makes me feel helpful and empowered against it. I do not think its for everyone. Being open about health concerns is not their responsibility as entertainers. They have enough stress that could trigger flares, we of anyone should understand that and not put anymore on them. If Selena has lupus she is obviously taking a break for a reason, and people need to not cause her more stress and let her deal with HER HEALTH all by herself.
Its not their job to be advocates. They didn't choose to have lupus. They are actors and singers and that's what they chose to do with their lives. They didn't say "wow this debilitating disease sucks, I'm going to talk about it and advocate for it so that all my possible future employers totally want to hire me". We often have that fear just with normal every day jobs, and you think these people who are expected to be active, on their feet, and healthy want to admit what's going on with them. Its their lives, they aren't our sick gift from god to help US. Its a little selfish to expect all of them too.
If Kristen Johnston, Selena Gomez, Anna Gunn, Nick Cannon, Toni Braxton, or any other lupus patient in the limelight is reading this I wish you nothing but better health. If you make the decision to be a lupus advocate I commend you for it and thank you. If not I wish you nothing but luck in whatever else you are pursuing.
I was diagnosed with lupus four years ago when I was 16. It has been a rough few years but while I have lupus it doesn't have me!