The 3 Words That Can Hurt a Person With a Chronic Illness
“You look great!”
Those three little words can make us feel lost, duplicitous and lonely. It’s odd how being told how great you look — which everyone covets — can be hurtful to a chronically ill person like myself.
We long for people to understand that we may look great on the outside, but we’re tired of feeling sick every day on the inside. We hate the drama of it all. We would give anything not to spend another day clutching a heating pad, slugging down hot peppermint tea and praying that somehow another elixir will cure us.
They don’t know my latest fashion splurge were pajamas with a soft tie waist because the ones I had hurt my belly. We’d like them to know that one day is up then an hour later it’s a no-go. So you go back to bed and hit restart. It’s five steps forward, six steps back, crawl forward and then time for a nap.
If we could change it, we’d all fight for a place in line. But the reality is, we can’t — at least not yet. We join drugs trials and take medications that can make us even sicker.
So how can healthy people who say “we look great” show a better understanding about what we’re going through? How can such an innocent greeting get tweaked?
Instead of saying “You look great,” try “I know you’re probably not feeling super, but your pajamas are darling.” That acknowledges our tough daily battle, but it also sends a positive message. (Like I mentioned earlier, I have very stylish pajamas and my sock collection is to be envied!) We all want to be seen and to be treated with empathy and understanding.
Please don’t stop calling us because we can’t go out. Come to our house. We miss human contact. Ask if we need anything. A small gesture is completely awesome for us.
Please call and drop by for tea and tell a good joke, or better yet, hug me and compliment me about my awesome pajamas and my fabulous socks!
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Lead photo by Thinkstock Images
I was diagnosed with Crohn’s disease when I was 13 yrs. I was a tomboy who rocked party dresses. I was curious, loved my big Siamese cat called Shabooey and Surf, my soft shelled turtle. Curly Auburn headed, petite and topped off with enormous dark chocolatey brown eyes. The day the pain began, that little full of life girl, went dark...no one believed me. First bowel resection was in 1973...I had no idea how sick I was because back then or at least in my family, you did not speak of anything that wasn’t all shiny and bubbly. Thru the many, many years of confusion, denial and ignorance...I survived by skating on the surface of my life. Married, two beautiful children, a divorce and a successful career I loved, hit the fan and all 4 tires blew at once. In 2002 I became officially disabled. I had to stop working so I left the big city of SF and moved back to my hometown. I bought a pretty Victorian home and went from Corp executive to jeweler. After my 8th bowel resection, and blasting thru every drug on the market, tacking on more delightful diseases; sarcoidosis, primary immunodeficiency, Sjögren’s, and the list goes on I decided enough is enough, for Pete’s sake. I opened Heartandhammers.etsy.com and became a tiny business owner. And then I rescued a ginormous, sweet 110 lb dog, Greater Swiss Mountain dog who I named Ollie, a darling little sprite of a kitten, aptly named Skeeter and my older, mature Ruby. She is a calico with all the grace of a queen bee. We are happy some days, others too much pain. Bearing the weight of too many diseases takes the wit right outta me. I’m single so I do my best to balance everything but plain and simple...it’s really damn hard. I’m writing this from the hospital..I’m a little drugged up, sleep deprived and feeling lonely but...I’m a warrior now. So I’ll do what needs to be done and get home to my little family of 4 legged loves....rinse and repeat.
pamelasquires