Working with teens and kids means I have a lot of conversations about language and the power of words. But, more often than not, it’s the adults I’ve encountered that end up putting their foot in their mouths. Part of this blunder can be traced back to the stigma surrounding illness and our silence as sufferers. How will anyone know what you go through every day unless you share a bit about your experience? I learned long ago that trying to keep your illness a secret is so much more destructive than the perceived danger in sharing. I narrowed my list down to five mistakes people make and how to turn those phrases into caring statements or questions. Don’t miss the links at the bottom of the post to other great resources for those struggling to talk about chronic illness!
- “Get well soon!” – Unfortunately, pills and even surgery won’t push my brain back where it’s supposed to be. This is said with good intention, but it only conveys how little people understand about chronic illnesses. Chronic is defined by Dictionary.com as “persisting for a long time or constantly recurring.” No amount of rest or injections will make me better. Instead, try something like “I hope the pain lets up,” or “I hope your medication is helpful.” Recognize that there’s no cure, only varying degrees of the illness.
- “My Aunt drank Kale smoothies in a magic well and cured her polio!” – That doesn’t happen. Or, if it does, I seriously need to hunt for a magic well. Every illness is as unique as each person living with it, so don’t assume that this person has obviously never thought of bathing in vegetables. Most of us would trade anything for a cure that simple. Treatments are chosen for certain reasons, and most illnesses require several different combinations of treatments. If you’re wanting to offer advice to a sick friend, you might want to familiarize yourself with their illness, and ask if anything specific helps. If I tell you I’ve had 12 nerve block injections for my migraines, don’t ask me if I’ve tried Tylenol.
- “Why don’t you sit in the back for five minutes?” – My brain is falling down my spinal column, but by joe I think sitting in the dark for five minutes is absolutely what I need! One of my previous bosses used to ask me all the time if I needed to lay down in our break room for a couple of minutes, surrounded by her perfume, to get rid of my migraine. No. Things like caffeine, or cold and hot compresses can sometimes help. Ask if there’s anything you can get your ill friend, rather than diagnosing their problem for them.
- Any blanket comment about their lifestyle is absolutely wrong. My neurologist recommends Gatorade for bad flare days; it helps give your body a boost and helps offset some negative medication side effects. My old boss used to say things like, “Those drinks are bad for you,” or “Do you know how much sugar is in those?” Sick people don’t want to be sick. It is never your place to tell that person how to live. If you’re concerned about why they are doing something, ask before you put on your invisible physician coat.
- Any assumption about ability is discrimination. I’ve faced people who have openly told me they think I’m faking. I’ve missed out on meetings and opportunities, because workplaces have told me “I assumed you wouldn’t be up to it,” or “I figured you’d be wiped out.”
The main message: ASK BEFORE YOU LEAP. Don’t put your foot in your mouth.
This is one of the main reasons I’ve become much more open about my illness. If people feel I am comfortable talking about my malformation, then they are much more likely to ask a question rather than force an ignorant statement on me.
Other resources for talking to chronically ill friends, family members, or coworkers are out there. I’d recommend:
What’s your biggest chronic pet peeve? What have you done to combat it?