Life Lesson #461~ Perception VS Reality

 

"When you have a rare disease you face two battles. One being the illness itself. And the other, living in a world where so few people understand what you're up against." ~ Unknown. 

Let's talk about perception, reality and chronic illness.  

Can we just be honest? Let all the pretense go? Chronic illness is one of those things that most people don’t ”get” till they “get it”. And let’s be brutally blunt now. What so folks think they know isn't always what's actually going on. You know what's happening to your body. I mean it's happening whether you like it or not, right? Yeah, you know. And your doctor knows but  there's a particular kind of person whose perception doesn't quite match our reality. Whatever your real life is doesn't hold water in their eyes. You're making it up. Being dramatic. You just need attention. And sadly, that becomes the narrative. 

I don't know why so many folks these days feel they’re adept at diagnosing and interpreting our ill health. I can't answer that. Nor can I explain why people feel your illness and mine are insignificant or even imaginary. However, denial, anxiety and fear come to mind. Essentially, humanness. If the skeptics don’t have to acknowledge our illness, then they don’t have to accept the cause and effects of our disability either.

I've heard it. Just like you have. Mostly through the grapevine, but I know the lines. "There's no way that's a real disease." Or, "She's just looking for sympathy." Best part is despite your specialist's degree, education or experience, not to mention diagnosis and prognosis, those folks have some kind of bogus medical expertise the professionals haven't discovered yet. Why? Because you and I don't look sick. Again, reality versus perception. It's a slippery slope.  And sadly, living with chronic illness for the better part of 41 years has taught me there's always going to be those who question if you're really sick or not. It's just a fact. 

Bottom line. If you're a spoonie you know exactly who in your life I'm talking about. Some folks call your illness fake. They might even say you're exaggerating. But let's be honest, anyone who needs to deny your illness isn't ready to deal with your reality. 

Personally, I find those who dismiss or try to invalidate your ill health fear what they don't know or understand. So what do they do instead? All they can do. They focus on what makes them feel safe and in control of the uncontrollable. High jack the narrative. Making it up as they go pretty much. It's easier to pretend your illness isn't real than face the fact you're really sick. Or that time isn't on their side or in your favor. 

And as frustrating as it is for you and me, there's always gonna be those folks who judge us. To assume, and push their inexperience off as gospel truth. But you know what the truth is? Only those who live in fear accuse and those who lack courage, assume. 

So let me turn the tables for a minute. If you're a doubter, I have a few questions for you. Have you sat in the doctor's office with me? Have you sat beside my bed in the hospital? Have you waited for me to come through surgery? Have you read my lab or imaging reports?  Asked questions? Gotten real answers? 

The answer is no. You haven't. 

Am I mad? No. The truth is most of us aren't even angry. We're disappointed. If you live with any form of a chronic illness you don't have the spoons to waste on unnecessary anger.. 

Look, I get it. It's scary. And yes, Google can give you a glimpse, but it sure doesn't qualify you or me for a medical degree. I mean if I could pretend I wasn't sick I would. But I can't. That's not my reality. 

Why am I addressing this now? It's time. I'm not putting this out here so ya'll can feel sorry for me. That's the last thing I want. In fact most spoonies try to keep things as low key as possible. But if you're gonna call me or any of us out behind our backs...I'm gonna set the record straight with facts. 

I have 5 autoimmune diseases and 10 additional chronic health conditions. I've had 15 surgeries, covid twice, and I’m officially living with long covid. I've had a TIA, DVT and 2b Triple Negative Breast cancer. My life now consists of navigating my work schedule around 8 specialists while managing a small pharmacy on a daily basis. 

I’m not gonna sugar coat it. My condition is progressing. But no, I'm not dying tomorrow. However the reality is my body isn't going to magically heal itself. And that's OK. It's part of the process. Am I scared? Yes, I am. But fear and denial aren't going to do any of us any good. I am living with my disease. Many in fact. I get up. Face the day. Take my chemo and a gagillian (yes, I'm being dramatic) other meds. I go to work. Come home. Make dinner. Live my life. And yes, I try not to complain too much. The reality: I'm struggling. Chronic illness isn't for the weak. It's tough. Perception: She's dramatizing things. Can't be that bad. She's still smiling.

 

But if you're close to me, you understand where my health stands. You get it. I don't have to prove or explain myself. Hand over lab reports or test results. Pull out meds or equipment. Those who love me, who really know me, see me...as I am. No pretending, no pretense. Just love, acceptance and genuine care and concern. 

I'm sick. That's the whole story. I have nothing to prove or explain. I'm not competing with anyone. My reality is my reality. Not a perception. I'm simply a girl, with chronic illness, living my life, the best I can everyday. 

"Just because I could yesterday doesn't mean I can today. But just because I can't today doesn't mean I won't tomorrow." ~ Unknown 

~Merida Grace