If you haven’t already heard the news (where were you?), Justin Bieber recently announced that he’s not on meth and has actually been diagnosed with Lyme disease. Allow me to kick off this essay by saying that I’m so sorry he’s dealing with this sh*t, I’m glad he’s overcoming the struggle, and F*CK YEAH to Biebs for always openly discussing his health, whether it’s this new diagnosis or about his mental health. It takes guts to use your mega-following that reaches BILLIONS of people to discuss sensitive topics like your personal life, especially when publicly discussing our health is so stigmatized. A true hero.
NOW *clears throat* allow me to explain why I’m frustrated AF over this situation.
For those who
live in a bubble don’t know, Lyme disease is essentially an inflammatory disease/infection that’s transmitted from deer ticks to humans. When someone gets bit by a Lyme-carrying tick, they can experience a bunch of unpleasant, debilitating symptoms affecting the nervous system, joints, and other body organs. In 2020, and in every new year, there will be over 400,000 additional diagnosed cases of Lyme in the United States alone. Justin Bieber is one of the newer cases. Avril Lavigne is a well-known celeb with it, too. Ugh, why do ticks have to go and make things so complicated? Anyway. Wanna know who else has Lyme disease? Me. I have Lyme disease.
Let’s rewind back to fall 2017, when I spent a lovely afternoon adventuring along a local nature trail with my friend and her dog. I didn’t know a teeny tiny nymph tick bit my leg on that trail, but it did, and I didn’t find it when I did my post-hike body scan. One month later, my health drastically declined. I couldn’t breathe when I got up to go to the bathroom. I was absolutely exhausted… like, literally stuck to my couch with zero energy. I wasn’t hungry (a CLEAR sign that I was unwell). A coworker told me to go get a blood test on my lunch break, so I did, and lo and behold, I got a call from my doc on my way into work a few days later saying that I tested positive for Lyme disease. Cue ugly crying to my boss when I walked into the office and told her I had to go pick up meds because I was basically dying.
Two weeks of super strong antibiotics, accompanied by the dying off process of the spiral-shaped bacteria called spirochetes (that makes you feel like you’re literally dying), didn’t even do the trick. It’s 2020, and I still have lingering effects from that damn tick bite, including fatigue (yes, I get enough sleep), shortness of breath when I exercise (no, I’m not just out of shape), and numbness in my hands and feet when I drink (yes, I drink anyway and tell strangers at bars to punch my leg just to prove I can’t feel it). A month is a long time to go undiagnosed, but I was lucky enough to catch it that early—yes, EARLY. Some people go months or YEARS without a proper diagnosis, and as a result, they undergo severe neurological damage and experience far worse symptoms, like joint damage, organ failure, and even paralysis.
OK, so why TF am I so mad? For a few reasons.
First off, if you read the comments on Justin Bieber’s OG post, there are a ton of people giving him love and support, which is amazing. But there are way more people (on Twitter) blowing up this situation into a feud about Justin’s health vs. Selena Gomez and her battle with Lupus. Relevant? I think not. Yes, Lupus is another major chronic illness, but why the f*ck does this have to be a battle about who’s got it worse or which one is more severe? Why can’t people just send their ~thoughts and prayers~ and leave it at that? How about people actually care that Justin has been sick with this brutal condition and wish him well instead of turning this into a fandom battle?
Second, when Hailey showed her support, people attacked her, too—calling her a model who should shut up because she doesn’t know any better. Like??? Pretty sure she’s supporting her husband who’s sick, and if you actually read her tweet, her message is really important. Instead of downplaying the severity of ANYBODY’S health, let’s learn about WTF this disease is so we can help the hundreds of thousands of people who suffer from it every damn day. The really sad part is that when it comes to learning/helping/supporting those with Lyme disease, we as a society are basically at step 0. That’s because there are a lot of people who deny that chronic Lyme disease is even a thing. So we have a long af way to go.
For those who are trying to downplay the severity of Lyme disease. Please do your research and listen to the stories of people who have suffered with it for years. Making fun of and belittling a disease you don’t understand is never the way, all it takes is educating yourself.
— Hailey Bieber (@haileybieber) January 8, 2020
For the record, chronic Lyme is VERY real. In simple terms, it’s the persistence of a Lyme infection that doesn’t go away and consistently wreaks havoc on the body by presenting those terrible symptoms long after the OG course of antibiotics have been taken. For the non-Beliebers (had to, sorry), the National Institute of Allergy and Infectious Diseases and the CDC both published a whole post about it (because it’s REAL). But, ICYMI, journalists have gone as far as to deny IN THE NEW YORK TIMES that chronic Lyme exists. And, when that journalist received backlash, she posts this equally as reckless tweet: “To everyone sending me ‘information’ and personal stories on chronic Lyme: you assume I have not done any reporting or that I will somehow read your story and be convinced. I feel for you, but I do NOT believe—not does any expert I trust—that chronic Lyme exists.” See my thoughts on that in my tweet below.
Thankfully, there have been incredible, influential people who are working toward building a more Lyme-literate society so these deniers can be shut down. Wait, what’s a Lyme-literate society? People, but more specifically doctors and other medical specialists, who know WTF Lyme disease is, how it’s contracted, how it impacts people who’ve contracted it, and how to treat and/or manage it. Because right now, the public is severely misinformed and doctors don’t know how to properly care for people like us, which is why so many people go undiagnosed for so long.
Avril Lavigne, a fellow Lyme survivor, runs her own foundation and donates proceeds of her sales to support Lyme research and awareness. Because in her own words, “Lyme disease is a global pandemic but NOT a global priority.” And although Justin Bieber is newly diagnosed, his voice is louder and carries more weight than those who’ve been silenced and belittled when we’ve shared our experiences in the past, so I really hope he uses his platform to help those in the same boat as he is so no one has to suffer like us in the future.
View this post on Instagram
Today @JustinBieber shared that he has Lyme disease. There are too many people that have this debilitating disease! People I love and care about and many friends and fans I have crossed paths with. To everyone affected by Lyme, I want to tell you that there is HOPE. Because Lyme is a daily struggle, for the better part of two years, I was really sick and fighting for my life. Writing #HeadAboveWater helped me get through the worst of it, but the bad days still come and go. At the time, putting together my album saved my life. I needed to tell my story and to be able to share my experiences with others. Lyme disease is in all 50 states in the US and in EVERY country in the world, except Antarctica. It is a global pandemic but NOT a global priority. I never want others to suffer the way that I did, and because of that it is now my mission to raise awareness & funds that will help eradicate this life-altering disease. Portions of proceeds from every show on the rest of the #HeadAboveWater tour and merch sales will continue to go directly to Lyme disease. I will continue to fight and to support! @TheAvrilLavigneFoundation supports people with Lyme Disease, serious illness or disabilities. We raise awareness and aid PREVENTION of the Lyme epidemic. We impact the lives of individuals and families affected by Lyme Disease through TREATMENT grants administered by our charitable partners; and we’ve aligned with @globallymealliance to accelerate scientific research. Please, JOIN US as we endeavor to educate people, prevent the spread of Lyme and find a cure. Our initiatives enable us to provide HOPE and expand the number of lives we’re able to transform. TOGETHER we can do this. #FightLyme #LymeIsReal #TheAvrilLavigneFoundation
Which is also why I’m SO FRUSTRATED over this whole thing! It takes CELEBRITIES to announce having a disease that 300,000+ people live with every day in order to spread some awareness about it?? IMHO that’s extremely f*cked up. So many people live with this illness, and no one blinks a GD eye because we’re nobodies, but someone as famous as Biebs says they have it and NOW interest is a little bit piqued? And even still, the conversation reverts back to a fight over him and his ex about who has the worse illness? GTFOH.
Maybe you didn’t know, or maybe you didn’t care to know about Lyme disease prior to Bieber’s diagnosis because you or a loved one hasn’t been diagnosed. Well, on behalf of those who battle this illness every day, I ask you to please care and become aware of how to prevent getting that dreaded infected-tick bite (read the CDC article all about that here). Because if you frequent grassy areas or hiking trails, you’re just as susceptible to contracting this disease as someone as small as me or as big as Biebs. If you don’t give a sh*t about us, then at least care about yourself.
Despite my aggravation at how the announcement has been received so far, I’m grateful that Justin Bieber is open about his Lyme diagnosis to his millions of followers, and I’m hopeful that maybe things will finally change and we’ll see an improvement toward a more Lyme-literate society moving forward. I just hope he never has to face doctors who tell him his condition doesn’t actually exist (like I have). I hope he never has to deal with people telling him that his symptoms are “just in his head” (like I do). I hope he’s able to find the medical help he needs, despite how there’s a severe lack of knowledgeable specialists and nobody understands what the f*ck he goes through every single day (like everyone else with Lyme). Who knows? Maybe he’ll help to smash the stigmas we face all the time and bring us closer to the better healthcare system that we’ve been needing for so long. One can only hope. Anyway, here’s “One Less
Lymey Lonely Girl” (which is WAY better than his new song “Yummy” … #yikes).