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Dear Kelly Osbourne: No, Your Illness Is Not 'Trendy to Have Right Now'

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I don’t know you personally, but I’ve always had a great deal of respect for your bold hairstyle choices. We’re alike in our desire to stand out, in our love of patterned skirts and winged eyeliner. I’ve also just learned from recently released excerpts from your book “There Is No F**cking Secret” that we are alike in that we have both lived with an invisible, chronic illness: late-stage neurological Lyme disease.

My heart hurts to know that you too have been touched by illness — that you too may have felt your body turning against you, your brain acting as if it was not your own. Within just the short excerpt of your book that was shared online, your story contains so many parallels with those of the chronically ill: unexplained, seemingly-disconnected symptoms. Medications that don’t work. “I can’t live like this anymore.”

I’m so glad the explanations and the medications eventually came for you, Kelly, but for so many, they never do. That’s why advocacy is so incredibly important and it’s why your voice means so much to those of us who are ill. It’s also the reason why the way you’ve begun to use that voice is so disappointing. Here’s the quote from your book I’m referring to:

“I’ve kept quiet about my Lyme disease, not only for fear of pharmaceutical companies coming after me because of the cure I found in Germany but also because it seems like the trendy disease to have right now, and I’m tired of seeing sad celebrities play the victim on the cover of weekly mags. Since I know firsthand how awfully debilitating it is, I know who really has it and who is just trying to prolong their 15 minutes. I don’t understand how anyone could think that the life you have to live with Lyme disease is glamorous.”

These are harsh, heavy words, Kelly. They’re also fundamentally untrue, and the chronic illness community needs you to understand why.

Lyme disease is not the disease to have “right now:” It’s a disease that hundreds of thousands have been silently struggling with for years and years. Many have been misdiagnosed and mistreated by doctors, as you were. They’ve been cast away by loved ones who don’t understand the complexity of their condition, left afraid to speak up because they’ve been told their illness is “in their head” more times than their foggy brains can recall. By referring to your illness as a “trend,” you’ve missed an opportunity to tell the world how common Lyme actually is, and how hard it is to accurately diagnose.

By referring to your illness as a “trend,” you’ve also suggested that it’s something people would willingly want to have, or say they have. Did you know that this is actually a common, incredibly hurtful misconception about those with chronic illnesses? It follows patients from their doctors appointments to their dinner tables, and it can be an enormous roadblock in both receiving an accurate diagnosis and receiving support. The suggestion that I could be somatizing or exaggerating my own symptoms greatly slowed my diagnostic process, and it planted seeds of self-doubt that have been far from an asset to my recovery. Somatization is something model and model-mom Yolanda Hadid was also accused of on The Real Housewives of Beverly Hills, which brings me to the topic of those you’ve called “sad” celebrities. “Sad celebrities” who “play the victim on the cover of weekly mags,” to be exact.

I don’t know what you see, from your angle, each time a celebrity opens up about their experience with a chronic illness. But from my angle, I see visibility, hope. I see Mighty commenters and members of online Lyme support groups expressing their deepest gratitude that someone finally validated the way they have felt for so long, that reading about a public figure’s journey helped their family members understand them better. If it wasn’t for Yolanda Hadid’s choice to go public about her life with Lyme, I may have never known to seek out my own diagnosis. Would you have known to, either?

“Since I know firsthand how awfully debilitating it is, I know who really has it and who is just trying to prolong their 15 minutes,” you continued. But, Kelly, you cannot possibly know who has and does not have Lyme disease, no matter how difficult your own experience has been. And stating that you can only serves to exacerbate another misconception about illness: that is can always be seen. Assuming something that isn’t outwardly visible, or doesn’t “look” like your own experience with illness, isn’t real only serves to further isolate those whose experiences we don’t understand, and invisible illness is isolating enough without assistance.

Your upcoming book is not an illness advocacy book, and that’s OK. But you’ve put yourself on the Lyme list and people are listening to you. So when you speak about your experiences, try to remember the person you were when you first became ill. Try to remember the deep hopelessness, the exhaustion, the need for understanding. If someone doubted you, try to remember what they said and why it hurt you so deeply. Those of us who live with chronic illness face enough doubt on a daily basis — we don’t need your doubt, we need your support.

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Photo by Disney ABC Television Group via Flickr

Originally published: April 6, 2017
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