I know I might not hold the "popular" opinion on this topic, but I felt like this needed to be said. As more celebrities come out and speak of Lyme Disease it's really important to hold them accountable for how their words affect each and every patient globally.
Kelly Osbourne is releasing a memoir about her life. Yesterday, lot of media outlets got an advanced copy, and when they read her chapter on how she battled Lyme Disease they wrote up news pieces with titles such as "Kelly Osbourne Almost Died From Diagnosed Lyme Disease" and "Kelly Osbourne reveals stage 3 neurological Lyme Disease diagnosis in new memoir." Pretty shocking headlines! When I saw them I felt shock, then sadness for her. But as I waited on the article to load I also felt hopeful. I thought, "Wow, another celebrity will help advocate!" However, then I read the article and I was utterly disappointed. Her snippet goes as follows:
Trendy disease... that struck a nerve. So let's break it down, shall we? Yes, in Hollywood there are more and more celebrities coming out and sharing the hell they went through when they contracted Lyme Disease. It's not just Yolanda Foster; it's Avril Lavigne, it's Crystal Hefner, it's Kris Kristofferson, it's Debbie Gibson, it's Ally Hilfiger and so many more. They have lent their voices to the cause, they have advocated for the little people & they have given a face of legitimacy to this cause. This is so important and necessary right now, because for every one celebrity speaking out there are 10 other voices saying chronic Lyme disease isn't real. Patients are mocked by doctors telling them "it's all in your head" & have to fight tirelessly to be taken seriously.
If you watched the Real Housewives of Beverly Hills you saw Yolanda Foster fighting through 2 seasons of ruthless women saying she has Munchausen syndrome. They all speculated if her illness is real and gossiped about if she's even truly sick or not. She put up with a LOT, and sadly it's what so many people go through. In fact, Yolanda is releasing a book this year called "Believe Me: My Battle With The Invisible Disability of Lyme Disease" which is a memoir about her fight with Lyme. Even Yolanda, a well known figure, had to fight through getting made fun of & not being believed. It's hard out there for a patient! Therefore calling it a "trendy disease" is so hurtful to our cause. Because oh yes Kelly, everyone is just begging to be diagnosed with a life altering illness! People are lining up with the hopes of contracting Lyme disease so they can suffer through hell & lose pieces of their lives. Is she kidding?? Mind you this was in her book... it was proofread and edited MANY times. This went to print, with the full knowledge of what those words meant. This wasn't a slip of the tongue or an accidental comment. That's what makes it so much worse.
My next question would be, what does the fact that she believes it to be a "trendy disease" have to do with her not speaking out sooner? Is there some rule in Hollywood that only X amount of people can have a particular disease? I absolutely do not understand how that plays into a reason to not speak out. I could get her saying it was private & she felt like she wanted to keep it to herself. But that's not what she said. It's like, whoops too many celebrities beat her to the punch so she couldn't speak out about it? It's baffling to me. Because then I ask the question of, why now? Is now a good time to admit you had this "trendy Disease" because you had a book to write & it made for a chapter with drama? Lyme Disease is not a punch line, it is not a thing to be used for book sales or headlines. This disease takes people's lives. This disease is ruthless, and I do not take kindly to what feels like an insult to this community.
So what should she have said? If her point was that a lot of famous people have recently shared their diagnosis of Lyme disease then maybe let's look at WHY that's the case. Lyme disease is an epidemic, and its growing every single year by astronomical proportions. It is the fastest growing vector borne infectious disease in the United States. It's only natural that it would also affect celebrities, because no one is immune to it. Kelly had a great opportunity to parlay that sentiment into discussing how Lyme disease is a growing epidemic & how so many people (famous or not) are being diagnosed daily. But she chose not to. She had this great moment to convey that, but ultimately she chose poorly.
There are good advocates & there are bad advocates. Kelly is an example of a bad celebrity advocate. Do I believe she suffered? Of course I do. But I also believe she lives in a bubble most Lyme patients do not. She had the money, connections & resources to call up a personal Doctor, fly to Germany & get expensive specialized stem cell therapy and care. She is lucky and blessed enough to call herself cured and healed. For her it was a quick fix & an easy fix. Perhaps that bubble she lives in leaves her far removed from seeing the real suffering and horrors that every day normal patients go through. Perhaps she lives in a different world in Hollywood & that was her experience. Maybe in her mind it was a "trendy disease" that she felt embarrassed to be lumped in to. So she stayed quiet, got well & went on with her life. Good for her, but that is not reality. Lyme patients would do anything to get well in a snap. Unfortunately that isn't the case for the majority, yet in her memoir (which is making rounds nationally) it was portrayed as such. Like hey, no big deal, just a quick 2 week treatment and you'll be fine! This will only fuel the skeptics & the people who wonder why Lyme takes so many years & years to recover from.
What happens now is her choice. If she really cares she could use her celebrity status for good. She could lend her star power to raising money for advancements in research. She could team up with any of the organizations for awareness campaigns. The possibilities are endless. But I suspect that once this gets her book sales she will fade into the background and not speak up about it again. That is certainly her prerogative, and its certainly her decision how much of her personal life and health she shares with the world. But boy would I love to be surprised and be wrong about this. I hope she realizes her mistake and apologizes. I would LOVE to see that happen.
I really feel like she hurt the greater cause and only furthered her own cause by telling a quick jarring story as a snippet in her book, with no regard for how her words will hurt a community who has fought tirelessly for recognition.
I promise you that Lyme disease is not "trendy" by choice. Perhaps Kelly should take a gander at the Lyme Disease obituary page to see that. This is an epidemic on the rise, and as an advocate I will never stop fighting for the recognition of this disease globally. I hope her words don't undo any progress that was made, because we have all fought way too hard for every single ounce of advancement which was made to this cause.
xoxo,
Christina
If you watched the Real Housewives of Beverly Hills you saw Yolanda Foster fighting through 2 seasons of ruthless women saying she has Munchausen syndrome. They all speculated if her illness is real and gossiped about if she's even truly sick or not. She put up with a LOT, and sadly it's what so many people go through. In fact, Yolanda is releasing a book this year called "Believe Me: My Battle With The Invisible Disability of Lyme Disease" which is a memoir about her fight with Lyme. Even Yolanda, a well known figure, had to fight through getting made fun of & not being believed. It's hard out there for a patient! Therefore calling it a "trendy disease" is so hurtful to our cause. Because oh yes Kelly, everyone is just begging to be diagnosed with a life altering illness! People are lining up with the hopes of contracting Lyme disease so they can suffer through hell & lose pieces of their lives. Is she kidding?? Mind you this was in her book... it was proofread and edited MANY times. This went to print, with the full knowledge of what those words meant. This wasn't a slip of the tongue or an accidental comment. That's what makes it so much worse.
My next question would be, what does the fact that she believes it to be a "trendy disease" have to do with her not speaking out sooner? Is there some rule in Hollywood that only X amount of people can have a particular disease? I absolutely do not understand how that plays into a reason to not speak out. I could get her saying it was private & she felt like she wanted to keep it to herself. But that's not what she said. It's like, whoops too many celebrities beat her to the punch so she couldn't speak out about it? It's baffling to me. Because then I ask the question of, why now? Is now a good time to admit you had this "trendy Disease" because you had a book to write & it made for a chapter with drama? Lyme Disease is not a punch line, it is not a thing to be used for book sales or headlines. This disease takes people's lives. This disease is ruthless, and I do not take kindly to what feels like an insult to this community.
So what should she have said? If her point was that a lot of famous people have recently shared their diagnosis of Lyme disease then maybe let's look at WHY that's the case. Lyme disease is an epidemic, and its growing every single year by astronomical proportions. It is the fastest growing vector borne infectious disease in the United States. It's only natural that it would also affect celebrities, because no one is immune to it. Kelly had a great opportunity to parlay that sentiment into discussing how Lyme disease is a growing epidemic & how so many people (famous or not) are being diagnosed daily. But she chose not to. She had this great moment to convey that, but ultimately she chose poorly.
There are good advocates & there are bad advocates. Kelly is an example of a bad celebrity advocate. Do I believe she suffered? Of course I do. But I also believe she lives in a bubble most Lyme patients do not. She had the money, connections & resources to call up a personal Doctor, fly to Germany & get expensive specialized stem cell therapy and care. She is lucky and blessed enough to call herself cured and healed. For her it was a quick fix & an easy fix. Perhaps that bubble she lives in leaves her far removed from seeing the real suffering and horrors that every day normal patients go through. Perhaps she lives in a different world in Hollywood & that was her experience. Maybe in her mind it was a "trendy disease" that she felt embarrassed to be lumped in to. So she stayed quiet, got well & went on with her life. Good for her, but that is not reality. Lyme patients would do anything to get well in a snap. Unfortunately that isn't the case for the majority, yet in her memoir (which is making rounds nationally) it was portrayed as such. Like hey, no big deal, just a quick 2 week treatment and you'll be fine! This will only fuel the skeptics & the people who wonder why Lyme takes so many years & years to recover from.
What happens now is her choice. If she really cares she could use her celebrity status for good. She could lend her star power to raising money for advancements in research. She could team up with any of the organizations for awareness campaigns. The possibilities are endless. But I suspect that once this gets her book sales she will fade into the background and not speak up about it again. That is certainly her prerogative, and its certainly her decision how much of her personal life and health she shares with the world. But boy would I love to be surprised and be wrong about this. I hope she realizes her mistake and apologizes. I would LOVE to see that happen.
I really feel like she hurt the greater cause and only furthered her own cause by telling a quick jarring story as a snippet in her book, with no regard for how her words will hurt a community who has fought tirelessly for recognition.
I promise you that Lyme disease is not "trendy" by choice. Perhaps Kelly should take a gander at the Lyme Disease obituary page to see that. This is an epidemic on the rise, and as an advocate I will never stop fighting for the recognition of this disease globally. I hope her words don't undo any progress that was made, because we have all fought way too hard for every single ounce of advancement which was made to this cause.
xoxo,
Christina
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