5 Things People Wouldn't Guess About Life With My Disease

There is so much about all of us that isn’t seen from the outside. Our internal struggles, our physical struggles, issues we may be encountering with family, friends, career, etc. Although I know people didn’t have x-ray vision into my world prior to diagnosis, post-diagnosis it seems even more inevitable that most folks wouldn’t even come close to guessing what my day-to-day is like just by looking at me.

Five things people don’t see when they look at me:

1. I don’t feel as good as I look.

If you catch me on a decent day, when I’ve decided to put valuable time and energy into putting on makeup and getting a shower in, I can pull off healthy pretty well. Many people mistake my efforts as a sign that I’m feeling as well as I am looking. Although I appreciate the compliments, it is not safe to assume my outside matches my inside.

2. I never get a day off.

Regardless of how good I seem, how good I look, how much I have or am accomplishing, I have never, ever, ever had a single waking hour off from my disease. From the first-noticed symptom to now over two years, there hasn’t been even a minor amount of time that I’ve been allowed to forget or not have to make allowances for my body’s shortcomings. That alone is an exhausting reality. It is a constant that demands my attention and deference… more than even any of my children ever have, and one that will not ever go away.

3. I had attainable life plans that were crushed.

My symptoms came on rapidly and therefore a chronic condition didn’t enter my mind. I thought that as soon as I got a correct diagnosis, then the appropriate treatment plan, probably some course of drugs would be administered to clear this all up and I could go about my life. I was very naive in the beginning as to the long-term life goals that I never doubted would happen, would never be able to come to fruition.

4. Social events often have great consequences.

I’ve always been a social person and I love seeing friends and spending time with people. I’m in awe when I actually make it out to one and will do all I can to show up with a smile on my face. It makes me happy to get out and I relish that time and I have gratitude in my heart that I can enjoy it. I also may not function for two or more days afterwards. My children may have to feed themselves. The house will succumb to complete disarray. I most likely didn’t schedule anything for the days after an event, but if I did, they are often cancelled. These are the things I have come to expect and anticipate.

5. I’m surprised at what I can do — and at what I can’t do.

It’s amazing that I can go to the gym. Having needed assistance in the past accomplishing simple things around the house and with my children, I’m ecstatic that I’m able to do most “normal” things others can do. However, what may not be as obvious is that going to the grocery store feels more difficult than going to the gym. That when I take a shower, I have to take a break between shampooing and conditioning because holding my arms up makes them feel like they are made of lead. The pace you see me move around in is not my natural inclination and it is designed to keep me from being out of breath in a situation that doesn’t call for that.

Follow this journey on Living and Breathing — Relatively Unscathed.

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