TOUCHED BY LYME: What not to say when someone is sick or in pain
Guest columnist Toni Bernhard, who blogs on the Psychology Today website, says even well-intentioned people may not know how to talk to the chronically ill.
It’s highly improbable that this well-intentioned comment will result in my picking up the phone. You’ve put the ball in my court and I’m unlikely to hit it back, either because I’m too shy, too embarrassed, too proud, too sick—or a combination of the four. I’m not going to call and say, “Can you come over and do my laundry?” But if you call and offer to come over and do it, I’ll gratefully say, “yes”!
“I wish I could lie in bed and watch TV all day long.”
It may sound like this couldn’t possibly have been a well-intentioned comment, but given the tone of voice in which it was said to me over the phone, I’m certain it was. I believe that the hard-working friend who said it was genuinely thinking, “Lucky you to have so much leisure time.” When she said it, I was still so sensitive about being sick—including being worried that people might think I was a malingerer—that tears came to my eyes. Then I wanted to scream, “You have no idea how it feels to be sick and stuck in bed with no choice but to watch TV!” Instead of screaming, I mumbled something and got off the phone as soon as I could because I could feel the sobs coming—as they did as soon as I hung up.
“Disease is a message from your soul, telling you that something is wrong with your True Self.”
This is an excerpt from one of dozens of emails I’ve received from people trying to diagnose and/or cure me. I must admit that I have no idea what that sentence means. Are the soul and the True Self different entities, and the one that is okay is sending a message to the other one saying that something’s wrong with it? Bottom line: This is not helpful! Oh, and another person said she’d assist me to get my health back—free of charge—by showing me how to do soul retrieval. Sigh.
“The third cousin of my brother-in-law’s sister’s best friend had what you have and said she got better by drinking bottled water.”
Another sigh.
“Have you tried sleeping pills?”
Sleeping pills? Who hasn’t tried sleeping pills? Even healthy people do! Sleeping pills may be helpful for some people, but they are not a cure for chronic pain or illness. And while we’re on the subject of “Have you tried…” If it’s available by prescription, I’ve tried it. If it’s available as a supplement, I’ve tried it. If it’s available as a Chinese herb, I’ve tried it. If it’s available at all, the odds are very high: I’ve tried it.
“Just don’t think about it.”
This comment left me speechless…but still thinking about “it.”
“Aren’t you worried that you’re getting out of shape from living such a sedentary lifestyle?”
Uh…yes. Thanks for reminding me.
“Have you Googled your symptoms?”
Let me count the ways.
“At least you still have your sense of humor.”
Thanks, but I’d rather be known as humorless but healthy.
Stay tuned. My next piece: What Those with Chronic Pain or Illness DO Want to Hear You Say.
© 2012 Toni Bernhard
Toni Bernhard is the author of the How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, winner of the 2011 Gold Nautilus Book Award in Self-Help/Psychology. Website: www.howtobesick.com
Haha, I have heard almost each one of these.
I’d prefer to be funny, AND healthy. I’d sacrifice wealth though.
I don’t think that’s too much to ask.
Thanks for reading my piece Louis. Yes, I’d prefer funny AND healthy and, like you, would sacrifice wealth (well, if I had it!). Warmest wishes to you, Toni
I had someone tell me when I was so sick that I was suicidal… that they couldn’t pray for me as it was a waste of their time… God didn’t hear my prayers because I’m a sinner!
Lesson: Regardless of your religious belief, don’t take away the last glimmer of light a very sick patient has away… When all else fails — as they fall deeper into the Lyme well, they only have left –hope…. and when that’s gone… prayer…Ripped away from me cold callous phone call. It was the lowest point in my disease, and exaerated my symptoms from the stress to have someone lord over their beliefs as a sword to push me over that edge of the cliff when a feather could have.
Thank God, there were Lyme supporters who in turn prayed for me over the phone, and told me this person was wrong that God loves me just as I am and, yes, He always hears all our prayers…mine too and even answers them. I forgave them, but it took time to understand the cruelty and consider their state of mind.
Now, all my friends and loves are authentic and supporting of me 100%.. Lyme takes away somethings… but may give other gifts to you with time.. Real authentic loving relationships only need apply. But for Lyme, a lesson I would have never learned what most don’t in a life time. I’m in a much better place now, and understand what any chronically sick patient needs to hear. Kindness is far easier than thoughtlessness.
Well, most know the saying “the road to hell is paved with the best intentions”. I think even the best layed intentions or off-handed comments can come off as competely ignorant and insensitive to someone who is suffering from an “invisible” disease. Lyme is a complex and insidious illness that can effect people in so many ways and I guess in most cases, unless you -have- Lyme, you just don’t really “get” it.
Thanks for reading my piece. I’ve learned from the emails I get about my book that there are so many chronic illnesses and pain conditions that are invisible. It’s been quite an education. But the one thing we all seem to have in common is that most people don’t understand what our lives are like and it’s only the precious few who recognize that ignorance and ask us to educate them. They are friends to treasure. All the best to you, Toni
So true! Very nice piece of writing!
Ellen – Thanks for your nice comment. I’m so glad you enjoyed the article! Warmest wishes, Toni
My personal favorite “we all get tired and overwhelmed at times”. Oh really??
Julie – Ah, yes that’s another one I could have included in my article: we all get overwhelmed and tired at times. These comments are so hard for us to respond to because, it’s true. Everyone does get tired and overwhelmed. But it bears no resemblance to what it’s like to be sick day after day after day. The friends and family who understand that are special indeed. All my best to you, Toni
The one I really can’t stand, “Well, you look great.” I know it’s meant to be a compliment but it carries with it the vague sentiment that people don’t actually believe I’m ill.
Julie – “I look great” is so hard to deal with because it’s hard to respond to. I talk about it in the next piece — how it would be nice if someone followed that with “but how are you really feeling?” Thanks so much for reading and commenting. Warmest wishes, Toni
My favorite, when my dad had late stage Lyme disease — after “Is he sick?” was the ubiquitous “Oh. Well…at least it isn’t Cancer.”
I wish it had been Cancer. Then, we might have gotten some support from our church and the medical community.
Emily – That’s a terrible comment to have to listen to. I’ve had others say that that was said to them. And you’re right, cancer patients get an incredible amount of support from everyone. Take care. Toni
I appreciate your honesty. I have chronic lymes and have never been antisocial until my diagnosis. Talking to my healthy family and friends usually dissapoints me and even hurts my soul. Having to realize that there are no words to accurately explain what im going through is devastating. I gave up trying because like you, ill be in tears. Ive had to face the obvious truth that most people cant begin to wrap their mind around my disease and symptoms.
Stephanie – I hear you. Illness can be so lonely. Sometimes it feels as if no one understands. I’m fortunate to have a supportive husband, but most of my friends have drifted out of my life. I treasure the few that remain. Take good care of yourself. Warmly, Toni
Stephanie- I hear you say that talking to your healthy friends and family usually disappoints you. My teenage niece has Lyme’s and I want to support her and let her know my love for her is forever and unconditional. She is over 3 hours away so I do not get to see her very often. How can I support her from afar? I definitely do NOT want to ever make my niece feel worse than she already does. It hurts me to know she doesn’t feel well EVER. I wish I could help…..
The man I’m dating has Lyme Disease, misdiagnosed as cancer. The relationship is complicated. I’ve overused the “if you ever need me, call me” line. Maybe one of the factors in the complication of our relationship (or lack thereof). This was helpful and amusing in a sense. I’ll avoid these remarks!
I loved reading this. My brother often tells me that if I stop drinking coffee, I’ll feel better lol no one understands what we go through. I’m 26 years old and currently couch bound when not struggling to keep working just to afford treatment. I often tell people, “if you really want to do some thing for me then listen to me complain with out judgement, make me dinner so I don’t have to get up for the rest of the night, little things will make me happy.”
I was glad to stumble upon your blog. Having lived with CFS for 15 years now I can relate to everything you say. “I’m not tired, I’m sick” really resonated with me. I get so tired of people telling me to ge more rest. You have to have this illness to “get it”.