If "Real Housewife" Michaele Salahi had an official brand name, it could be called Controversy and her recent announcement of multiple sclerosis has added in new debate. Is she faking it or isn't she? Most people first heard of Salahi when she and her husband allegedly crashed a White House state dinner. Lately she has gotten into a scuffle with The View's Whoopi Goldberg and she's explained that the reason the Redskins have no record of her as a cheerleader is because she lied about her age.
So, when Salahi announced that she had multiple sclerosis on September 15th, it came as no surprise that most people doubted her confession. Or, most people who do not have health issues, that is. In 2002 I began National Invisible Chronic Illness Awareness Week, held annually in September, and ironically the story of Salahi's MS broke during the middle of the week this year. Web sites around the internet buzzed with controversial remarks.
What was the controversy? Blog comments reflect that most people who are healthy believe it is just another one of Salahi's tricks to gain publicity with the release of a tell-all book, Cirque Du Salahi, by Diane Dimond. However, those who live with invisible illnesses personally understand how one day she could be stuck in bed and another hinting behind the scene with NBC's Today Show that she'd like to be on Dancing with the Stars.
So does Michaele Salahi's admission of living with MS help or hinder awareness about invisible illness or multiple sclerosis? I believe, despite her less than squeaky clean celebrity-hood there is the potential for benefit.
Why?
1. People with illness are angry enough to let their voice be heard.
Frankly, I am surprised that so many reporters chose to do a fast story about their skepticism of her claim of MS rather than doing even a smidgen of research on invisible illnesses. According to statistics, about 96% of illnesses are invisible and no assistive device is used. I have seen few articles that ask, "What if she is telling the truth?" that are not written by someone who does not have an illness.
Despite the ignorance of the reporters who jumped on the "liar, liar, pants on fire" bandwagon, controversy stirs talk. And people with invisible illness are commenting on articles and blogs more so than they ever will on an announcement of a new MS medication.
2. Illness associations have a hot news topic for the week.
I doubt the National Multiple Sclerosis Society (NMSS) would have chosen Salahi to be their next spokesperson, but it got their telephone ringing. NMSS spokesman Arney Rosenblat, in response to Salahi's weight, stated, "Weight loss is not a typical symptom [of MS]. However, if you are on medication or you have depression or fatigue, you could have appetite issues. If you know someone with MS, you know its hallmark in unpredictability." Unfortunately, most reporters quoted only his first sentence, making it sound as though even he had doubts about Salahi's illness.
3. It is an opportunity for patient advocates to create awareness about the variety of illness symptoms.
Reporters and those without illness were quick to chatter about Salahi's high heels and how she "looked so good." NAMS Rosenblat's comment "[MS] is often called the 'You look so good' disease because its symptoms are often unnoticeable to others" has been buried by the press, but patient advocates can grab it and remind people of this.
4. Celebrity gossip will always scoop health information to make good T.V.
When these stories happen patient advocates understand that the headlines will work far better for patient education than any PSA. On the Today Show September 24, Hoda Kotb tells Salahi, "I think now people come out with illnesses and. . . . no one looks down on someone," and Kathie Lee Gifford agrees, "There's no stigma to it."
But in my opinion, Salahi was right when she responded, "But there was a stigma. I remember being in a job where people got fired for less. . . .So I always had the fear. . . I thought, 'Oh, gosh, I'll be the next to go,' so I kept it a secret. No matter, if my hands, I couldn't feel them, or they went numb, I thought, 'No way am I letting this secret out.'"
Those who believe there is not a stigma have not lived with illness or they have likely been blessed with an unusual cocoon of support.
5. It reminds us of celebrities with illness and their causes.
Salahi told Kobt and Gifford she revealed her illness to scoop the media before they told the world. Many stars, including Michael J. Fox and Montel Williams have done the same thing. Like it or not, Salahi is now a part of the celebrity chronic illness club. The benefit is that it gets all celebrities who live with illness a boost in awareness of their causes.
And celebrities with illness increases awareness about the disease. The article, "Media Coverage and Public Reaction to a Celebrity Cancer Diagnosis," published in the Journal of Public Health last month, describes a studies results that showed a significant increase in public interest in disease prevention following celebrity diagnoses. Salahi's revelation may just spur some people to say "I wonder if I should see a doctor about this."
In conclusion, while those of us with invisible illness may grow weary of celebrities getting the media's attention about their diseases when we have suffered silently for years, we also recognize that it is the most likely way the challenges of coping with an invisible illness will get those prime time slots. Behind each celebrity there are millions of people living joyfully despite illness. Unlike Salahi, we may not have a doll that resembles us or a Bravo reality show, but we have passion for life reporters will be hard-pressed to find elsewhere. And we won't even crash your dinner.
Follow Lisa Copen on Twitter: www.twitter.com/lisajcopen
Early on, it was easier to participate in social activities, the vision my social circle remembers and 21 years later, I am subject of criticism based on visual observations. Social functions may be enjoyable but crushing fatigue/pain follow for days and people do not see this side of Chronic Illness. Leaving social situations prematurely is necessary as symptoms change by minute, hour, day repeating weekly, monthly, yearly. There are no sure-fire preventative measures to stop symptoms. Such is the life people with Invisible Illness face.
Perhaps, Michelle went to that bar, had a drink to calm her nerves after the White House escapade before going home. Excitement IS a stress that causes the body to produce adrenaline, fight or flight hormone, which wreaks havoc on bodies with Chronic Illness. The adrenaline surge may be the reason for Michelle’s “flair”. This viewpoint, is speculation but brings to light an important point…How can we truly judge another person and determine what they should or should not do without knowing intimate details of the lives of people with Chronic Illness?
Invisible Illness week is a great time to bring MS to public attention. Doubtfully, she will profit from her “colorful” well-timed announcement but if we follow the example to be colorful, make noise and BE VISIBLE, perhaps “well” people will understand organizations need donations to help those with Invisible Illness.
Part 1 of 6: http://www.youtube.com/watch?v=uxiqXmbvvuA
Part 2 of 6: http://www.youtube.com/watch?v=Ml1s3_kFwCY
Part 3 of 6: http://www.youtube.com/watch?v=-smsV73x5fE
Part 4 of 6: http://www.youtube.com/watch?v=9bDbnVLJ2AU
Part 5 of 6: http://www.youtube.com/watch?v=lOmUVHpk2mI
Part 6 of 6: http://www.youtube.com/watch?v=JYLxxqYpRdY
1. According to Ms. Dimond's book, the Salahis had to leave the State Dinner before being seated because of a relapse of MS by Michaele. But what did they do? Walked across the street to the bar at the Hays Adams hotel where they cooled their heels drinking cocktails for two hours or so, only then to call the limo driver to pick them up outside of the White House, as if they just exited the dinner. If Michaele was sick from MS, I don't know, but I'm not sure sitting in a bar is the correct medical treatment.
2. The Salahis and Ms. Dimond maintain this was some deep, dark personal 17 year secret, never shared with even their closest friends, and only exposed on national television last month on the cusp of releasing their so-called "book".
FALSE. The fact of the matter is that Michaele's purported "diagnosis" with MS was publicly known and traded upon by the Salahis' now-defunct "charity", Journey for the Cure Foundation [currently under investigation by the Commonwealth of Virginia, if not the IRS as well]. MS? I don't know. Some deep dark "secret"? Hardly.
People Magazine and D. Dimond's Circus book have pointed out the Salamis left the India State Dinner b/c Michaele was having a MS flare up and they needed to head back home to rest. The Salamis did indeed go straight to the bar across the street ....and then true to form...stiffed the bartender. http://voices.washingtonpost.com/reliable-source/2009/12/salahis_stiffed_hay_adams_bart.html?hpid=moreheadlines
What a mess. Sadly, with events like this....it is their integrity, a life long condition, that also needs to 'get well'.
Second, there is no excuse for the Attention Seeking of "MS" and her husband, so no change in my opinion of the woman.
Third, I also have an "invisible" disability and I know how judgmental people can be.
Thank you for seeing past the knee-jerk "we hate the Salahi" news coverage to see that there is a living breathing and fallible person (just like the rest of us) behind this sensational news story.
Sincerely,
Diane Dimond
www.DianeDimond.com