Life Lesson #480 ~ Small But Mighty

 

Let's get real today!  Be genuine and authentic. Speak truthfully, wholeheartedly with intention. If you're a spoonie, you probably know where I'm heading. If you're not. Pull up a seat, sit down and join the conversation. There’s a lot here to unpack.

Ok, my question today, if you're dealing with any form of chronic illness, is this. How do you deal with family, trolls or outside influences who call you a phoney? Every spoonie has a muggle in their life or two or three even who invalidates their illness.Those who make it abundantly clear you're putting on an act.  You don’t even have to think about it. Names are already coming to mind, aren’t they? Let’s face it, you know the drill. It's an old routine and we all know how it goes…You need attention. You're dramatic. There’s nothing wrong with you. Oh and my personal favorite....you're faking it. 

These kinds of people can’t grasp how you can actually be THAT sick, at all. I mean, come on. You don't look sick. Right? You're too young, or too happy. You're not laid up in bed right now. It has to be in your head. You’re a mental case. And you're doctors? They don't know what they're talking about. You must be lying. But if you're chronically ill, you know the drill. These types of people choose to ignore your health conditions and pretend you're over exaggerating. Why? Well that's a good question. So, let's talk about it. 

If you're chronically ill you’ve faced a few hurdles getting to your diagnosis and treating it. You’ve probably had a doctor or two find nothing wrong with you and had another one tell you it’s just anxiety. Been there. Done that. Then everything goes sideways. Alarms go off. Whistles sound. Those seizures suddenly show up on imaging. The acid reflux  you knew you didn't have but they insisted you did turns out to be a mass wrapped around your vocal chords and pushing into your clavicle. Yep. I’ve been there. We all have. And chances are you've experienced a medical agnostic more than once in your lifetime too. And you're absolutely right. It's relentless, bewildering, painful and upsetting. 

I have no answers to why some folks become difficult and demanding about your health. Why it’s a threat and a challenge to debunk. And how is it that our friends and loved ones can turn on us so abruptly, ultimately punishing us for having "make believe" illnesses? But I do have my own school of thought. For one those folks are not medically trained. Let's get that straight right off the bat. And two, they don't have degrees. They aren't MDs. That is unless we’re talking about a Google degree of medicine. And by no means have they ever sat through an actual face to face appointment with you. Bottom line, they desperately want to be in control. Admitting they're inexperienced and unqualified is terrifying. Instead they lash out. And we're the ones who are usually on the receiving end of their agitation and antipathy. 

Look, we all have skeptics. I’ve had a handful myself. You know the folks who would rather doubt the truth. So what? Let them take on that role. It’s their choice and their circus. Not yours. Your job isn’t to defend your illness. It’s simply to rise above the conjecture. Tell you what. How about we get down to the nitty gritty truth of it. Get it out on the table. Are you ready? Alright. Let's pull the scab off.

Those who talk behind your back. Those who play down your illness or call it a hoax are terrified of the truth. They're not cowards. Sure some may be. But most are just terrified. They're reluctant and afraid to face the truth. Why? Because facing the truth means coming to terms with reality. And reality isn’t always fun. Pretty much they'd rather live in denial. Sadly, all they really do is waste their energy and precious time you don't have. So, let it go.

One way or another, we get through it though. Sometimes quicker, sometimes slower. We get mad, hurt and even despondent for a while. But in the end, we're fighters. Truth is sometimes we don’t get back up from a blow. We can’t. And that’s OK too. But when we can we shake it off and keep going. Why? How? Because we're the little train that could, even if we’re not 100 percent sure we’re gonna make it. You and I gotta remember while as spoonies we’re mostly resilient, not everyone else is. Some folks aren't built for adversity or hardship. Sure, they may talk a good game. But if the tables were turned, could they actually walk the talk? See, when push comes to shove it's easier for the cynic, skeptic, doubting Thomas and disruptor to blame you and me and cut bait and run. 

The reality is we're not going to change the minds, hearts or actions of those who refuse to sail through the storm. They can't leave the shore. It’s too much and too terrifying. The deep end of the ocean frightens them, even with a life preserver. So stop trying to coax them in the boat with you. Set your course and sail. 

In the end what those of us fighting chronic illness come to understand is that being strong doesn't mean you're not fragile too. It's exhausting trying to smile when you're pushing through pain whether it's physical, mental or emotional. But that's the life of a spoonie, isn't it? As my best friend and fellow overdrawn spoonie always says, "we're the Energizer Bunnies" . We take a beating and keep going. What other choice do we have? Should we throw ourselves out of the boat and drown? Or lie down and die in the lion's den to simply prove the doubters wrong? Heck no! We're chronically ill. Not stupid. We're not martyrs. We’re warriors.

So, to the disbelievers, naysayers and want- to -be- physicians, without a license that is, I want to be clear. No one is being disagreeable. Fellow spoonies, the truth is if someone doesn’t want to see you clearly, don’t make them. It’s not your job to convince anyone of your illness. It’s their job to be aware despite being distraught or confused. Refusal to acknowledge the truth doesn’t change the narrative. You're still sick, I'm still sick; and yes, we’re still dying. But we’re not faint of heart and you won’t ever catch us running away. So, to the scoffers, go ahead, burn us at the stake. Throw us to the lions. Stone us. Even crucify us if that’s what you need to feel better. Reality won’t bend. No one’s going to keep you from pretending to be wise, and all knowing. But ultimately like the Great Oz, the curtain will eventually come down. 

Until then, I just want to say to my fellow spoonies, take heart. Keep going. When you're weak. I'm strong. When I fall, you're there to help pick me up. Let go of the detractors. Let the hurt and pain others inflict go. I can tell you, in the end, our circle may be small, but it's mighty. I’m grateful for our sisterhood and my journey sisters. The ones who've chosen to get in the boat with me and hold my arms up when I can’t myself. Who walk beside me. Carry me. Listen to me. Sit silently, cry with me, wipe away my tears and tell me to get it together. So, thank you for being you. I love you with all my heart. Spoonies till the end.

~Merida Grace