Thursday, January 10, 2013

Living With Invisible Illness

A letter on “invisible illnesses” such as fibromyalgia, chronic fatigue, lyme’s disease and a host of others. Well said.

“I am the face of invisible illness. Invisible illness is exactly that – you can’t see it. But I can. Every time I look in my mirror I see the rigors of daily life with a chronic condition that no one is even sure I have because I don’t look sick.

What is a day in the life, you wonder? Thank you for asking. Most people don't. I’m weary to the bone most mornings because I am the proverbial princess (or prince) and the pea and no position, temperature, bedding or pillows make me comfortable.

I have irritable bowels in case you wanted that information, too. That’s an understatement because I may not be able to “go” for days, yet have uncontrollable diarrhea on my way to work or elsewhere and barely make it in time. Or I might be blessed with bouts of both.

My bowels may not be the only irregularity. My blood pressure, blood sugar, or body temperature may all swing back and forth like a yo-yo.

Pain is always part of my day in some form. It may be headaches, joint or muscle pain. It may be mild or it may be debilitating enough that I can’t lift my arm over my head. The pain may be accompanied by weakness, numbness or tingling sensations just to make it interesting.

There are days I may feel like I can run a mile and others where I can’t do the dishes. My children, my grandchildren often wear out what energy I DO have simply by being children.

If I’m lucky I can work at a job or own a business. Sometimes though, I feel fortunate if I can walk to the mailbox. If I do work, I am amazingly adept at adapting my workload to my up and down cycles. I have to be.

I have an invisible illness that dictates what I do and when and for how long. What I ate this morning may make me sick another time. The 30 minute walk on a beautiful spring day that I desperately want to take runs the risk of not allowing me to clean the house tomorrow because I won’t be able to function. My brain may be sharp as a tack right now, yet later I might forget what I had to eat today, my doctor’s name or a phone number I call frequently.

All the books I’ve wanted to write, nature photographs I’ve wanted to take, work I’ve wanted to do, people I’ve wanted to spend time with, activities I’ve wanted to participate in, places I've wanted to go….they’re all out there, waiting. But in here, I can’t ever know for sure if I can do anything more than dream of them because of an invisible illness that wants to control my life and does it quite well as a rule. But I have two choices as I see it: try or don’t.

Sadly, and blessedly at the same time, people don’t see anything wrong with me. I smile like them. I talk like them. I walk, get dressed, eat, go to the bank like them. But I see it. I see it in my eyes each day when I wake up. I see it on my face when I brush my teeth before bed.

I’m not lazy. I’m not making it up. I’m not antisocial. If I’m depressed it’s because I have baggage that weighs me down sometimes. What I am, is intelligent, funny, compassionate, a dreamer and stronger than you can possibly know because I deal with this invisible illness……alone.”

There is an element of sadness in this letter that touches my heart. It speaks to me of the compassion we all should have for each other on a daily basis for none of us knows what another is facing through the smiles they wear.