step by step…

After last week’s post regarding what to say to a chronically ill loved one, I thought I’d share a personal experience to demonstrate the frustration of conversing with people who do not understand an illness.

On a daily basis, I find myself faced with places where I need to ascend to a second or third floor, but there is no elevator. Stairs are not generally a friend to dysautonomiacs, but if it’s just one flight, I’m usually okay. However, I have major difficulty with the stairs at at a particular location.  Part of the difficulty can certainly be attributed to my lack of caffeine first thing in the morning, but the stairs are also covered in a thick carpeting, making it difficult for me to push off each step. By the time I have finished climbing the single flight, I’m dizzy, fatigued, off balance, and my heart rate has usually doubled, even though I’m on medication to help keep it low. In fact, my heart rate doesn’t always get that high when I’m lifting weights. So, needless to say, I take stairs very slowly.

About a month ago, an acquaintance walking up the stairs behind me commented on how I was walking up the stairs very slowly.  I notified her that I had an illness that effected my heart and, as a result, I take stairs slowly. She was obviously embarrassed and mumbled a quick, “Sorry, I didn’t know.” I had never informed her of my condition and felt it was a genuine mistake, so I smiled and told her it was no problem. Fast forward to a week ago, where the exact same thing happened. With the same person. The same acquaintance, walking behind me, again commented on how I take the stairs very slowly. I responded by saying that I walk very slowly and carefully up stairs, and she replied that she bounces up stairs and is very careless. As this person now knew about my condition, I don’t understand the purpose of again pointing out that I am slow. Perhaps she forgot about our earlier conversation, or wasn’t thinking.

I’m certainly not proud of the fact that I am in my early 30s and have difficulty climbing up one flight of stairs. Just a few years ago I used to run up and down stairs as a form of exercise when I was a poor law student who couldn’t afford a gym. I feel guilty when someone who could have climbed to the top by the time I reach the third step is stuck behind me on the stairs. But, like everyone else, I don’t like to have my weaknesses pointed out. It’s even worse when the weakness is something most do naturally and don’t even have to think about.

Sometimes I practice on stairs at home, just a few here and there, hoping one day I will jog up the stairs without issue. But, until then, I can only take it one step at a time. If you’re unlucky enough to get caught behind me on the stairs, bear with me.

Lisa Simpson: Remember, it is better to remain silent and be thought a fool than open your mouth and remove all doubt.
Homer: [thinking] What does that mean? Better say something or they’ll think you’re stupid.
Homer: [outloud] Takes one to know one.

Stay tuned.
– L

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