You Don’t Look Sick: Part Two

This is part two in a three-part series on frustrating lines, including explanation for their hurtfulness, better phrases to use instead, and ways for the chronically ill to retrain their brain to hear the kind intentions in all words.

You can read Part One here.  Now, let’s get back to business.

#5 AT LEAST IT’S NOT (fill in other horrible disease here).

The most popular fill-in-the-blank for me has been cancer. Please don’t say this. Do not compare illnesses. We all have or will have experienced our own personal grief, and at the time, they are each tragic in their own right. Saying the chronic illness warrior should be thankful because she is theoretically less sick than someone with cancer is like saying we shouldn’t be happy because someone else is more happy. Comparisons are not cool.

Instead: Do you feel like you’ve made progress since you were first diagnosed?

The only time comparisons might be okay is when we compare where we are now in this illness and our treatment to where we were when we first got sick. This simple question, or if applicable, “I’m amazed at how far you’ve come,” lets the warrior know you understand it has been a tough road.

#6 IF ONLY I COULD BE SURE YOUR HEALTH WOULD BE OKAY BY (fill in date here).

Twice now I have heard this exact line in my professional career, and it’s the ultimate dagger to what little pride I had left. After devoting 15 years to the education of high school students in what became my hometown, these were the words I heard from my superintendent. Recently I heard the same words during a discussion about a potential part-time job opening. Both moments brought angry tears to my eyes. I am well aware of my illness; I do not need anyone else to tell me I may not feel well enough to return to work. I grapple with that fear every single day.

Instead: None of us can be sure we’ll be healthy tomorrow.

The reality few want to acknowledge is tomorrow is not guaranteed for any of us. You could have a stroke this evening at your dinner table. You could suffer a heart attack while driving to work. You could be bitten by deer tick on your wedding day. The total randomness of those whose lives are turned upside down by sickness often scares the crap out of those watching from the sideline. I understand the risk taken by hiring me. I really do. But I wouldn’t apply if I didn’t believe in my abilities. Give me a chance. If I fail, no one will be more devastated than me. Unlike most employees, I know the value of health, profession, and purpose.  My open eyes make me a tremendous asset.

#7 You can beat this!  You’ll be back to normal in no time.

As difficult as this is to admit, this is my new normal.  I will never again be the person I was before my heart stopped working properly and Lyme ravaged my body.  I have experienced pain worse than childbirth, the demoralization of depending on my husband to wash my hair, the embarrassment of requiring a wheelchair.  The odds of my body returning to 100% are very, very slim.  But even if by some miracle, I were completely healed, I still could not be me.

For that, I am actually thankful.  I see life with more empathy and understanding.  I’ve slowed down enough to see the beauty all around me.  I’ve met people who inspire me daily.

I’m so far from normal, I’m not sure I even know what that is.

Instead:  We got this.

Very simple, yet profound.  You’re letting the chronic illness warrior know she is strong AND the “we” indicates you are going to help her through this journey. That means the world to us.  The illness has taken so much from us already; we want to maintain friendships, especially ones with sympathetic ears.  We can’t beat this illness….that’s why it’s called chronic.  But with the love of our family and friends and with excellent medical care, we can get ahead of it and find joy in our lives again.

#8 MY (fill in title, i.e.. uncle, friend, teacher, sister-in-law’s third cousin twice removed) HAD THE SAME ILLNESS YOU HAVE, BUT HE’S FINE NOW.

I knew nothing about Lyme disease until I was diagnosed with it.  Now, it seems everywhere we go –restaurants, kids’ birthday parties, in or out of state –someone tells us they know so-and-so who has or had Lyme.  In some ways, it’s comforting to know I’m not the only one.  But there’s two downsides to this.  I either get to hear that the individual is “all better,” which means he likely received the antibiotic treatment immediately after the bite, or I get to hear that the person is bedridden or psychotic.

People, this line is not a ray of optimism.

Instead:  You want to hear a funny story?

Yes, yes, yes!  We sure do.  The day in, day out business of fighting our chronic illness makes us crave bits and pieces of the real world.  Share your funny stories. Tell us about the time your son told the dentist that mommy and daddy “do the f-word all the time.”  (True story….but the f-word was fart.)

Help us out of our funks.  Bring us back to the land of the living.  Talk with us about everyday stuff.  Tell me about the silly thing your child did.  Listen to me as we weigh the odds of a new treatment plan.

Be present.  That’s really all we want.

To be continued in Part 3……

 

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