Today, on the National Invisible Illness Awareness Week Facebook page, was a post from the organization about the New Michael J. Fox TV show that premiers tonight on NBC. Here's a screen shot of the post they put up.
The post included an link to the NBC website with information on the new show. I have to say my reaction was one of true surprise.
Don't get me wrong. I love Michael J. Fox and think what he has done for Parkinson's Awareness is fantastic. If only we had someone with such celebrity who could speak for the IC community! Think what that might do for us. He has been able to testify before Congress to help increase research funding for Parkinson's, has established a foundation and IS the public face of Parkinson's. I fully intend to watch his new show and think it demonstrates that suffering from a chronic, debilitating illness doesn't mean your life is over. He is inspiring.
But, I am here to confess that this post on the INVISIBLE Illness Awareness Facebook page really bugged me. My gut reaction was - really, Parkinson's is being counted as an Invisible disease? If anything, this awful, disabling disease is among some of the diseases that hardly qualify as "invisible" and certainly not in Michael J. Fox's case. Watch an interview; watch his show - you will SEE very clearly and without a shadow of a doubt that he has Parkinson's. Yes, early on it develops gradually, sometimes starting with a barely noticeable tremor in just one hand. But while tremor may be the most well-known sign of Parkinson's disease, the disorder also commonly causes stiffness or slowing of movement. In the early stages of Parkinson's disease, your face may show little or no expression, or your arms may not swing when you walk. Your speech may become soft or slurred. Parkinson's disease symptoms worsen as your condition progresses over time.
And, while in the beginning, as the description above says, symptoms may be "barely noticeable", they are certainly not, in my mind, invisible. And of course, as the disease progresses, symptoms become more and more noticeable making Parkinson's one of the easiest diseases to SEE.
Those of us suffering from chronic, incurable, painful and truly INVISIBLE diseases would give anything to have this kind of publicity and access to a platform to raise awareness about IC!
I am not trying to minimize the battle of those individuals with Parkinson's. But I truly don't believe it should be classified among the Invisible Diseases category. We struggle enough to get people to pay attention to us; to believe that we are truly sick because they can't SEE what is wrong with us. I feel that it does a disservice to those who fight THAT battle every single day. Patients with IC and other truly invisible diseases that are accused of making it up, accosted in parking lots for using their Handicapped Parking Placard because some idiot decides they think they know better and that they have the right to tell us what we do and do not deserve! I can state with certainty that if a Parkinson's patient got out of a car parked in a Handicapped space, no one would approach them and accuse them of making up their need for that privilege.
Once again, as in a previous post, I feel the need to point out that right now, today, there are 4-12 MILLION people just in the U.S. suffering from IC and we can't get anyone to talk about this in the media! We struggle to raise funding for research and desperately need better treatment options. As for Parkinson's, there are as many as ONE MILLION Americans with Parkinson's, with a total worldwide estimated at 10 million.
The Parkinson's Disease Foundation website states that since it's founding, they have supported $100 MILLION in research for Parkinson's! Check out the link to the Michael J. Fox Foundation's Financials. I think you will be amazed by how much money is being raised by his Foundation, with his celebrity attracting other celebrities and making it so much easier to raise funds!