Thursday, September 26, 2013


September 9-15, 2013 was National Invisible Illness Awareness Week. I have posted about this a few times and go to their Facebook page and follow it. It's one more resource and place to go to help raise awareness about IC as one of the many invisible diseases that desperately needs awareness!

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!

I have stated this before and want to be very clear about this. I WISH THERE WAS NO DISEASE OF ANY KIND! No one should have to suffer from Parkinson's or Cancer, or IC or any other disabling disease.

It just gets so frustrating when we are all working so hard to raise IC Awareness, struggling to raise funds to support research funding, writing to our Congressional Representatives asking they support increased funding for research and we can't TOUCH the kind of awareness and money that is being raised for Parkinson's by Michael J. Fox and his celebrity friends, or as I wrote about previously, Maria Shriver and her work for Alzheimer's.

I was just left with the feeling: What's It Going To Take for IC to get this kind of awareness and support and fundraising? Who will speak for us and give us the big breakthrough we need to crack the type of funding we need to make a real difference in the lives of those of us suffering with IC.

What's It Going To Take? Until or unless we can get this kind of media attention those of us with IC need to get motivated, make our voices heard and do everything we can to help raise awareness and funds for research! 

Those of us with IC are what someone with Invisible Disease look like!


  1. As the founder behind Invisible Illness Awareness Week I thought I would share my perspective. Please understand that we have always had the perspective that "invisible" is tied to how we relate to others--not about our physical symptoms per see (see: )

    This means "invisible" can be defined by anyone in any way, depending on their personal perspective. Unfortunately, we may define ourselves as not having an invisible illness (for example, my hands are quite deformed from 20 years of rheumatoid arthritis) but to the world and our society, no one knows or understands I have a disease. It is invisible.

    Although in the Fox show many of the character's (and Fox's) symptoms are visible, many are not. He would be able to tell you that the struggles he deals with every day are so much bigger than a little bit of shaking. And this is one of the reasons I support this program. It shares the "behind the scenes" perspective of illness in a realistic way.

    He is not bedridden, he is not in the hospital (as is usually portrayed in our media when someone is ill) but rather he is deciding if he should go back to work or not and how his illness will be played up by his employer. He is acknowledging he is less secure in his looks because of the impact illness has had on his body image. His kids are asking questions and his daughter is trying to use his disease as a homework subject. But through the rest of the program, life goes on. There is dinner and parenting concerns, a child who is making messes with his friends, and he is wondering about his past dreams of playing the guitar.

    I think this is a great realistic view of what living with illness can be like. It does not represent all illnesses, or all of our days, but it's a start.

    Throughout the program, even in the script, his children are trying to figure out "what is Parkinson's" and "what is just him." His wife is asking him if he took medication so she can be intimate with her husband. It's just part of life--but not life--not their whole life.

    Invisible illness is not really about what can be seen-or not seen--it is about how it is perceived. I hope this explains my motive behind sharing about the show. I think it is one of the best portrayals our media and culture will have in recent years of illness--and that means illness, not just disabilities.

    The fact that Michael J. Fox is behind it assures me that they won't go too far off the mark of accurately portraying many aspects (though not all) of invisible and visible illnesses. And to this we should be glad that there is something on TV other than just the commercials that show people playing tennis.

    1. Lisa; Thank you for replying to my Blog post on this important topic. You make very valid points. My feelings are that there is no question whatsoever, in the fictional world of the tv show, or in the reality of Michael J. Fox's world that he has Parkinson's. I would say that is very clear and he does not have to "defend" himself against attacks from people accusing him of faking it because they can SEE his illness. I have spent the past two days defending those with true invisible diseases following the 60 Minutes segment by Steve Croft just this past Sunday. I am sure you would not have a hard time believing how many people are on the 60 Minutes Facebook page attacking people with Fibromyalgia and other illness as faking it. We have a difficult enough challenge getting people to believe in Invisible Diseases that I just felt more focus should be put on raising awareness for less understood, truly invisible diseases.

      I thank you again, so much, for your comments and I do appreciate your point of view. Whenever we can educate about any of these lesser understood diseases it's a good thing. I'd just like to see more attention to other, less known diseases.