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When a Man Suggested I Use 'Willpower' to Get Up the Stairs

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A few days ago I was in the parking garage at the hospital waiting for the elevator. I have a PICC line which requires weekly maintenance, and had just finished up my appointment. It was midday and like most of who live with a chronic illness, my energy levels were near depleted and were accompanied by skyrocketing pain levels.

As I waited patiently for the elevator, I began the usual worrying about how I would make it through the rest of the day. I still had to make the hour-long trip home, feed the dog, try to throw something together for dinner, and attempt to tackle the mound of laundry that had formed — all which I had no energy left for. The walk from the elevator to the car alone seemed like a colossal task.

As I ruminated about the challenges I faced for the rest of the day, a man approached me and the following conversation ensued:

“What floor are you on?”

“Sixth floor…”

“You should try taking the stairs!”

“Actually, it’s extremely difficult for me to navigate stairs…”

He then elbows me and says:

“Awwww come on, it can’t be that difficult for you! Just tell yourself you can do it! Willpower!”

As he sprinted off up the staircase, I felt like I had just been punched in the gut. My eyes stung as tears welled up.

Since my diagnosis of reflex sympathetic dystrophy, also known as complex regional pain syndrome, and becoming disabled in 2004, I have become overweight. To many who don’t know the health challenges I’ve faced, my weight is attributed to simple laziness or lack of willpower. At first glance, my disability might appear invisible, but if you look closely it isn’t. Numerous scars from six ankle surgeries, spinal cord stimulator surgical scars, a PICC line on my upper arm, swollen and discolored limbs, dark undereye circles from from pain-somnia, and an uneven gate are often hidden by clothing, makeup and a smile.

Over the last 12 years, unsolicited advice or comments from strangers have become the norm. These experiences have often left me with feelings of intense shame about not being able to function like I once used to. They have also led to me not taking full advantage of all the resources available which could improve my quality of life and allow me to participate in more things. I stopped using a disabled placard years ago after someone accused me of faking. I rarely use crutches or a wheelchair in public after hurtful comments made by strangers related to my weight and laziness.

This latest experience has made me realize this has to stop, and it must begin with me. I can’t control how others will think or feel about me. Their judgment is just that… theirs! It’s not my truth. It’s not my reality.

To the man who suggested I use the elevator, and to all others who feel the need to make suggestions to someone based on a quick snapshot you see:

Please stop pushing your expectations on people whom you have no idea what their story is. Well-intentioned or not, we don’t need or want your gratuitous advice. We are all trying to navigate this world the best way we can. We are struggling with real health challenges that may be invisible to you, but I assure you they are real. To live with the pain and other challenges we face takes strength, courage, a desire to live and persevere. We aren’t lazy or lacking willpower. We are doing our best each and every day!

The Mighty is asking the following:  Tell us about a stranger’s comment about your (or a loved one’s) disability, disease or mental illness that has stuck with you for one reason or another. Why has it remained significant to you? Check out our Submit a Story page for more about our submission guidelines.

Originally published: June 27, 2016
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