Lyme is not a punch line

Just this week Meryl Streep used her powerful platform as winner of the Cecil B. DeMille award at the Golden Globes to call attention to President Trump’s public mockery of a disabled journalist. It went viral and clearly struck a chord with people everywhere. The emotion in that room when Meryl spoke, was palpable. Not just because she’s a seasoned, veteran cinematic performer, but because it rang so true. In a gleaming gown in a ritzy room, this icon of the Arts chose to venture into the seedy underbelly of the current socio-political zeitgeist. Her expression was at once steely and highly emotive. I felt it. Millions felt it. Silently there was a sensation of consensus: it is categorically wrong to mock somebody who is physically suffering an ailment through no fault of their own. Meryl used an example of this precise act as the vehicle with which to paint a chilling character portrayal of the soon-to-be President of the USA.

So, politics of the day aside, what does it say about us if we tacitly accept the mockery of an ailment? You’re thinking, “well no one in their right mind would do that…” If you thought that, then I’m sorry to say you’d be wrong. While most all diseases and ailments are off limits for mockery, there is one that is considered fair game.

Now tell me, do we feel comfortable with jokes about:

“No! What kind of heartless monster are you?!”

“Heck No. I’m concerned for your soul.”

“Seriously, what is your problem?”

Multiple Sclerosis?
“Just not funny. Please find your moral compass because I’m afraid you’ve lost it.”

Lyme Disease…
“That’s the fake illness that’s in fashion now, right?”
“What disease? Is it a citrus allergy or something?”
“I’ve never heard of it before so I’ll LOL because compassion only applies to things I am specifically familiar with!”
“I had that, got treated early and I’m fine – those Chronic Lyme whiners need to get over themselves!”

Can you pick the one that doesn’t fit the pattern? Hint: I made it ridiculously obvious because I’m trying to make a point.

Full disclosure: I have Chronic Lyme Disease A.K.A. License to be abused by (most) medical staff Disease A.K.A. Wreck your life Disease A.K.A. You’re a crazy, lazy, liar Disease (did I mention crazy??) AKA your bank account is now empty Disease AKA just forget the things. All the things you held dear. Forget them. Disease.

It’s a great disease to have, ya know. I love how there’s no definitive, universal testing, treatment or diagnostic guidelines. It’s like finding a Willy Wonka’s Golden Ticket just to get a diagnosis at all. Should I celebrate? I don’t know. I love how I’m met with blank stares and occasional accusations of malingering from friends and loved ones with whom I previously enjoyed functional relationships. Who needs social acceptance anyway? It’s not like humans are hardwired to be tribal and interactive, I’m a happy little island. Another advantage to having Lyme is being accused of making an illness up, that’s a whole new level of creativity I never knew I possessed. The best part, though, is feeling like I’ve been hit by a Mack truck every day with the worst hangover of my life, limbs filled with cement and a ‘technical difficulties’ sign permanently plastered where my cognitive function used to be. Really, it’s amazing, you should try it.

Lyme Disease! It’s like all the other horrible diseases with none of the recognition. Guys, pro tip: if you want to fake an illness but you don’t want to make it too easy then I really urge you to consider Lyme. It’s hotly politically contested with two warring medical camps offering completely opposing views on every aspect from how to define it, how to diagnose it and how to treat it. There’s no financial subsidisation through the mainstream medical system. You’ll enjoy bemusement at best in medical offices and ER departments, at worst outright abuse and accusations of psychological problems. But the best part is that treatment itself makes you feel much, much worse before you can get better due to the Herxheimer effect…and treatment, once Lyme is disseminated and at late stage, lasts years. Yes, say goodbye to: your career, your social life, your independence, in many cases your love life. Say goodbye to your previously unappreciated yet inexplicably wonderful ability to seamlessly coexist with life.

For those who are still considering this illness as a contender for your faked ailment, please be assured that this new so-called ‘spare time’, often coveted by others, is thoroughly unenjoyable. You will very quickly learn that wherever your body goes, so do you. Reread that if you have to. Your body is no longer a friendly place to be. No amount of spare time will change that. So please reframe your concept of free time accordingly. There will not be luxurious baths with champagne flutes within arms reach, there will not be hours devouring every novel you’ve been recommended but too busy to read (your brain: it just won’t. It can’t), there will not be snacking on all manner of treats while watching endless movies (your body will no longer tolerate many foods including but not limited to: alcohol, gluten, lactose, fructose, coffee, refined sugar…etc. it’s a pick-a-mix of dietary issues, everyone is different!). There just won’t be the fun. Any of it. Get used to this if you have your heart set on feigning this disease.

So, all that didn’t put you off and you’ve somehow contracted a cocktail of protozoa, bacteria, possibly viruses (I say somehow but you were likely the unwitting lunch for a tick, you know, those cute little crawly blood sucking cesspools) and you’re wondering what the hell happened to your life? Welcome to Lymeland, friend. It might feel lonely initially as your existing friendships dwindle and you find your new primary relationship is with inanimate objects: to be clear, that’s the couch and your bed. The shower if you’re lucky but really it’s more like an awkward third wheel in your love triangle, sometimes you visit but you’d never choose to leave the couch or bed for your shower full time. It just doesn’t meet your needs like the others, ya know? But loneliness is an illusion. Yes, you heard it here first. Why? Because there are literally thousands, probably millions, of people like you out there.

Maybe that’s why Lyme Disease has caught the ear of TV screenwriters in recent years. I know this because one of the fallouts from falling ill is a very real need for distraction. Your body is a cage of horrible sensations that seem to be allocated arbitrarily by some terribly spinning wheel of symptoms, I imagine possessed by a really perverted omnipotent gameshow host in the sky. What’s his deal anyway? So, I was watching two contemporary, generally critically well-received, upbeat TV shows. I can’t watch medical dramas anymore despite the binge-friendly high episode count. I know, it’s a tragedy, but guys, my life is a medical drama.

First up: Crazy Ex-Girlfriend, the show with the refreshing anti-heroine with possibly the most intense nostalgia crush of all time. It’s great, there are musical interludes, I like it. When you’re sick and your body feels like a prison, often your eyes and ears which still may not be 100% functional (but we work with what we’ve got or we stare at a wall or the palms of our hands and really how long is that going to last before insanity actually occurs as a secondary bi-product of sheer boredom and existential angst? So, TV good. Yes.) are the only means of escape from the immense shittiness of your reality. In this diversionary outlet Lyme Disease was used flippantly which wasn’t so bad, but wasn’t great either.

The second show was Brooklyn Nine-Nine, again a charming, light-hearted series involving the antics of the quirky cast of characters in a police department. I specifically turn to shows like this when I feel dreadful. Let me clarify: when I’ve been having problems moving my arms, or talking, or my whole body feels like a phone on vibrate, or I’ve got uncontrollable whole body convulsions, or my heart is going off-script and doing all sorts of fancy beats that I appreciate are original but I really wish it wouldn’t because sometimes it makes me wonder if I might die. I long for the days when it just did its thing in the background. But those days are about 5 years behind me at this stage and I digress, so I turn to shows like Brooklyn Nine-Nine to make me laugh, give me respite. It’s my happy place, only to be rivalled by all the kitten fan groups I’ve joined on Facebook. My newsfeed is amazing, it’s like an adorable virtual cattery. Then just when I’m feeling better one of the characters on Brooklyn Nine-Nine makes a joke about Lyme Disease. Some invisible character not significant enough for a walk-on roll is described as claiming to have Lyme but, according to one of the lead cast, she must just be “depressed because she lives in Reno”.

You know who’s depressed right now and totally not in Reno? Me. And every other Lyme patient out there who saw that episode. Let me quickly rush in to qualify that it’s situational depression. We Lyme patients have to be so careful about admitting any kind of mood change lest it gets pounced on as some unlikely retrospective explanation for all the serious physical manifestations we have of what is, frankly, a very real illness. On a scale from the global reliance on fossil fuels to unicorns, Lyme often gets sold as being closer to the unicorn end of the spectrum but we are about as sooty as the exhaust from all the cars in China. We are real, Lyme Disease is real. Despite this, rather than being able to focus all our energy on getting well we simultaneously end up running a sort of defensive sanity PR campaign for ourselves; trying to be unnaturally cheery and inoffensive in a sort of hypervigilant attempt to attain credibility. The ludicrousness of this dynamic I think is inherently obvious. Let me put it this way: are you perpetually even-tempered and happy? No? Well watch out because that could be grounds for a psychosomatic Lyme diagnosis. Have fun with your newfound medical ostracisation.

So let me track back to the start where I spoke about Meryl Streep. Let’s just take a moment now that I’ve brought her back to mind to just sigh in collective appreciation. She really is a marvel. She makes a damn fine point too about ethics and character. Mocking or laughing at any ailment that has befallen another human being, whether immediately physically obvious or not, is abhorrent. I saw tears in the eyes of many revered celebs when the camera panned across the beautiful, shiny Golden Globes crowd as Meryl’s words touched their beautiful, famous hearts.

Is it unreasonable, though, for me to feel a hint of dejection watching this scene unfold? Agreeing wholeheartedly with her sentiments yet seeing something that undermines it playing out in well-written, entertaining and perfectly cast TV programs. It’s a bitter pill to swallow, and trust me, I swallow more than my fair share of pills. So here’s my request, my plea, not just for myself but for the many people out there who are only just getting through the day because they have Chronic Lyme Disease. Mums, Dads, Husbands, Wives, Colleagues, Kids, Friends, Lovers, all ages, all races, all around the globe. Lyme Disease is greedy, it doesn’t discriminate and chances are someone in your social circles has it, or sadly with the rise in cases annually, will have it. Awareness is amazing and TV can be a fantastic medium for that, but let’s not kick people, suffering from a debilitating, real illness, while they’re down.

They say laughter is the best medicine, and that’s true but Lyme should not be the punch line.



4 thoughts on “Lyme is not a punch line

  1. Joanne Horsley

    Brava Bella! An eloquent and intelligent response to the illogical hurtful and often nasty responses to sufferers of the insidious Lyme disease.


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