An Epiphany About Ankylosing Spondalitis , From the Bathroom Floor

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woman on bathroom floor by toilet hugging knees

It’s weird, the things you think about while you’re sitting on the floor of your bathroom. Yes, I also understand it is strange for me to be sitting on the floor of my bathroom. More about that in a moment, I need to back this story up a bit…

Many months ago, I hadn’t been feeling well. I had this bizarre-o rash on my face, fatigue that would not be tamed and a general “not well” feeling. I landed in the heart hospital with horrific chest pain, three days hooked up to all kinds of beeping things. The diagnosis? Acid reflux. I knew it was malarkey, and I went to my follow-up appointment with a plan to argue the diagnosis. My fatigue was brushed off as part of my depression. Um, no. Well yes, I battle depression, and no, this wasn’t it. But what was it?

I begged for more lab work, anything for more answers. I was a pest with a purpose; I’d wear them down until they directed me to someone else. Which they did. One visit with a rheumatologist, and we set sail for an answer. I prayed for any answer! I ultimately got an answer: ankylosing spondylitis. Yeah, I hadn’t heard of it either. As I researched the autoimmune disease, the more it seemed to fit. As often happens in autoimmune disease patients, if you have one, you have multiple. I was also diagnosed with fibromyalgia. It all seems to make the other issues of my medical past connect. Vitamin B12 & D deficiency, chronic kidney disease. Sheesh, quite the laundry list.

Meanwhile, back on my bathroom floor…

As I sit here, I’ve been on three different medications over as many months. Insurance got to make the decisions as to what I must “try” before the current medication. So, here I sit, the day after my first dosage. Nausea, fatigue, the battle between wanting to wretch or take a nap. Typically, I’d be stressing about the dust bunnies behind the potty, thinking about how the walls need to be wiped down or how I really never liked this shower curtain. But today, as I sit here, I feel defective, coupled with the guilt of feeling this way. I’m not battling a life-ending disease today. I’m fighting against being disabled. But that’s exactly how I feel.

As I first mentioned, it’s weird the things you think about while you’re sitting on the floor of your bathroom. I’m thinking about my lack of ability vs. disability. In this moment, for now, I’m not really able to drive to the pharmacy to get the recommended vaccine (before starting the next phase of my treatment). It’s only a temporary setback.

Imagine driving around your supermarket/pharmacy and seeing a vehicle pull into the handicapped spot. You expect to see someone get out with a walker or the ramp lowering for their wheelchair. That’s being disabled, right? Well yeah, it is right. But it isn’t the only right; disability comes in many shapes and sizes. Sure, we’ve all judged the overweight person on a scooter. “If they weren’t overweight they wouldn’t need that thing,” right? Fess up! We’ve all thought it. When we see someone step out of a vehicle on their own volition, we also think, “They don’t look handicapped.” I’m as guilty as the next guy. And as I sit on my bathroom floor, it’s as if I’ve been dropped on my butt for my way of thinking.

We are so quick to be the judge and jury of someone else’s conditions. We minimize the needs of other’s to maximize our own. I am the first to acknowledge there are others who are struggling far worse than me. Yes, I am fortunate, I know that. However, by minimizing our weakness, we also minimize the level of understanding for those around us. I have to be truthful with what I’m struggling with so others understand.

My (our) truth is necessary so we may recognize the truth in others. My truth: there are going to be days I have to pull-in, lay down and honor my body. It is also my truth to share with others, so you know the truth. Yes, I’d love to attend your special event! The truth of the matter: I may not have the energy that day. I may be struggling with excruciating pain. I may be concerned about the fact I will have no immune system to fight against a simple bug. Please understand.

The next time you circle the parking lot at Target and spot someone pulling into a disabled parking spot, remember those of us with invisible illnesses. Those of us who “look fine,” even though we are not. The next time you see someone cruising the grocery store aisles in their scooter, ask if there is something you can reach for them. Reach out, reach up. Reach down… you may just have to help a gal off the bathroom floor!

source;http://themighty.com

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