You couldn't miss the headline: Charlie Sheen is HIV positive. Networks scrambled to cover the news that he had a virus that could someday, maybe or maybe not, lead to AIDS. I admit, as a journalist, I too told his tale of woe, describing how, despite a reckless past, he had now learned his lesson and sought the medical treatment necessary to make the virus undetectable in his blood. I also, on a daily basis, have updated Lamar Odom's condition and that of other celebrities that wound up in the hospital. But, in my quiet hours at home I wondered, is this news? Do we really need to act as if the entire nation or the Centers for Disease Control and Prevention should be on high alert simply because a celebrity is sick?
Of course, I'm aware that ratings, page views, and tweets sometimes drive coverage. Celebrities have a built in fan base and that means people are desperate to learn anything they can about them. And, if they're sick, people will comment endlessly about their condition. I have no problem with that as long as the discussions are expanded to educating people.
Everyone's suffering is news. Yet people who aren't in the limelight, like me, who suffer from a chronic illness, are virtually invisible. Our conditions are often not discussed unless they're linked to someone who has made millions. Shouldn't it be the other way? I mean, celebrities have access to the best doctors and treatments, as well as the disposable income to pay for it while the average person frequently does not. Shouldn't the public be told how to survive with limited resources? How to find the best doctors or how to afford the best treatments? Unfortunately, too often, the stories we all hear are only told to satisfy a bizarre curiosity about the private lives of actors, musicians and other celebs and don't give any valuable information.
Now, I must also confess I am a bit biased. Every time I tell someone I've been diagnosed with IgG4 related systemic disease I get the side head tilt and a furrowed brow; that's followed by the question: What is that? Granted, I have a rare autoimmune disease so I don't expect the name of my illness to be well known. However, I try to give perspective by comparing it to conditions I think have a higher visibility like Lupus or Multiple Sclerosis. Still I get a puzzled look. Many times I hear, "Isn't that what Toni Braxton or Montel Williams have?" These same people aren't familiar with the signs or symptoms of either of these diseases. I suppose it's good that people know anything at all about a disease that does not personally affect them. But, there is more than can be done when a celebrity's illness is reported. It's the perfect opportunity to inform.
There is one upside to the world's fascination with the medical status of celebrities though. Some people like Magic Johnson, Bernie Mac, Liz Taylor, Rita Wilson, Elton John and Angelina have used their fame to inspire interest in and awareness of many conditions. It's this kind of activism that makes people who frequently feel invisible, like me, feel less isolated and helpless.