Tuesday, September 18, 2012

Things You Should Never Say To The Chronically Ill Person | Psychology Today *Full Article*

Good article from Psychology Today regarding the stupid things people say to the chronically ill.
Ya know what, there should be a class called - TACT - 101  hahahaa.  No... seriously, people do not know what to say to people that have an invincible illness or one that is a lifetime. They say rude, uncalled for things that are hurtful.  People should not be subjected to this treatment just because they are ignorant about your condition and lack compassion.

What Those with Chronic Pain or Illness DON’T Want to Hear You Say

Even the well-intentioned often don’t know how to talk to the chronically ill.

The purpose of this piece is not to make fun of those whose comments are off the mark; most people have good intentions. I've written it partly because I hope it will make those of us with health difficulties feel less alone and partly because I hope it will help others understand how to communicate with us better.Each of the following comments has been made to me at least once since I became ill in 2001.
“Give me a call if there’s anything I can do.”
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.
© 2012 Toni Bernhard
In my article, “What Those with Chronic Pain or Illness DON’T Want to Hear You Say,” I shared some of the comments that have been made to me since I became chronically ill in 2001. Many people shared that they’d been subjected to the very same comments…and more. And so, I’ve put together a small sampling of comments that readers have had to listen to. As I said in the first article, I’m not trying to make fun of others. My intent is to educate people about what we face and also to help us feel less alone.

Bottom line: Fielding these comments with grace and skill is yet another challenge faced by those of us with health problems. I’ve divided the comments into five categories:Change Your Lifestyle; Such an Easy Life…; Chronic Means Chronic; It’s Your Fault; and Religion and other SpiritualMatters.

Change Your Lifestyle

1. “Do you take vitamins?” This comment reminds me of the people who’ve asked me if I’ve tried sleeping pills. Who hasn’t taken vitamins?!
2. “Are you eating enough fruits and vegetables?” Lots of people report getting asked this.
3. “Just eat more.”
4. “Just eat less.” (This one forms a nice symmetry with #3.)
5. “Are you drinking water?”
6. “You just need some fresh air and exercise, that’s all.”
7. “Why don’t you go to bed earlier?”
8. “Why don’t you take a shower? You’ll feel better.” This one hit home with me because I have days when taking a shower has the opposite effect: this simple task uses up all my energy stores for the day.

Such an Easy Life…
1. One woman wrote: “I mentioned to a friend when I got to his kid’s birthday party that I almost didn’t make it because I’d been in bed most of the weekend and it was hard getting out of the house. He said, ‘You have such an easy life!’”
2. Wrote another woman: “It’s frustrating when someone thinks you are ‘lucky’ to have so much leisure time available. Yeah, it’s great to have so much time, but I’m unable to work and thus am so far below the poverty line that homeless people begging for change probably have more money at their disposal than I do.”
This raises what I think is a hidden epidemic for those with chronic health problems. Many are living below the poverty line, due to a combination of not being able to work and of having to spend any money they do have on medications and other treatments that health insurance doesn’t cover—if they’re lucky enough to even have health insurance. Tragically, poverty, chronic pain, and chronic illness too often go hand in hand.
3. Finally, this woman sums up “Such an Easy Life…” as well as I could:“My favorite is when people say I’m lucky that I don’t have to work. It’s like telling someone without legs they’re lucky they don’t have to take the stairs.”

Chronic Means Chronic
1. Several people wrote that they’ve been asked, “You’re STILL in pain?”Many people have said to me: “You’re STILL sick?” Yes, we’re still sick and we’re still in pain because…chronic means chronic!
2. Said to a person with chronic pain: “Don’t worry, you’ll be able to go hiking again soon.” I’ve had people say this to me about many activities—from traveling to resuming my teaching career. I think that if you’re not sure what a friend might or might not be able to do in the future, it’s better not to raise it.
3. “Call me when you feel better and we'll go to lunch or do something fun." Again, chronic means chronic.
4. “My mother-in-law had that and all she did was take a little Tylenol.”Sigh.
5. “At least it’s not cancer.” This comment doesn’t fit neatly under any of the categories I’ve used, but I wanted to include it because several people reported having had this said to them. It’s not helpful. In fact, one woman wrote that at least if she had cancer, her family would get more support both from the medical community and from their church congregation.

It’s Your Fault
I recognize that this category is subjective. Comments that I interpret as implying, “It’s your fault,” may not seem that way to others. That said, here’s a sampling of comments that, to me, are suggesting to a person who is sick or in pain: it’s your fault.
1. “You’re too young to be sick,” several people reported being told. One of them added: “Oh, how wish this were true. Maybe by the time I’m in my 80s, people will stop saying it.”
2. One woman reported that her friend, after listening with “a seemingly caring ear,” said: “Attitude is everything, you know.”
3. A young woman wrote that she’s been told to distract herself from chronic pain by “getting a job, mingling with people, and engaging mybrain.” About these comments, she said: “I’m sensitive about being perceived as lazy. I’m hurt whenever this comment is made to me. I’d love to be able to will myself to do whatever I’d like.” This resonated strongly with me because I spent years trying to will my body into good health. All I got for my effort was a lot of mental suffering added to the suffering of the illness.
4. “You must be out of alignment with your life and looking for an excuse to make some changes.” The recipient of this comment said, “But some of us really loved our life before we got ill.” To that, I say, “Yes. Yes”! I was never happier—personally and professionally—than when I got sick in 2001.
5. “Maybe if you quit talking about it, you’ll get better.”
6. “Look what happens when you don’t look after yourself.”
7. “Just snap out of it.” The woman who reported this comment went on to say: “Like it’s really that simple and I’m so totally dumb and stupid that can’t figure it out. How silly of me after so many years.”
8. Saving the worse for last, a person reported that his or her doctor said:“If you think of yourself as a cripple, you will become a cripple.” This comment is hurtful and inappropriate in so many ways.

Religion and other Spiritual Matters
This is a sensitive topic. We all have our particular religious and spiritual beliefs and they may understandably feel essential to our well-being. But in my opinion, religious and spiritual beliefs are so personal that unless you know that the person you’re talking to shares your beliefs, it's better not to raise the subject. As one person commented: “The assumption that all of us have or even should have identical spiritual beliefs is unrealistic in our pluralistic society. If you're not sure you're on the same track, it might best be avoided.”
Keeping in mind that this is a sensitive topic, I offer some comments that have been directed at those struggling with their health.
1. Two people wrote that they’ve repeatedly been told, “God never gives us more than we can handle,” and that it’s not at all consoling to them. In fact, they said it makes them feel like failures—as if they’re not handling well what they should be handling well.
2. “God has a plan for your life.”
3. “All things work for the Good for those who love God.” The woman who reported this comment wrote about it: “There’s nothing more annoying than some random bible quote thrown into your face as a ‘reason’ for chronic pain.”
4. “If you pray to God harder and longer, He will cure you.”
5. “The universe is trying to teach you something.”
6. One woman wrote that her brother repeatedly says to her, “Obviously you don’t pray to God enough because if you did, he would heal you. So you must be doing something wrong.” She said that every time he says this, she bursts into tears because she feels blamed for not doing enough to get better.
I’ve found that many comments about religion, regardless of the speaker’s intent, leave people that they’re spoken to feeling as if it’s their fault that they’re sick or in such pain. And so, these comments could have gone under the previous heading: It’s Your Fault.

Toni Bernhard, J.D.

Until forced to retire due to illness, I was a law professor for 22 years at the University of California — Davis, serving six years as the law school’s dean of students. Author of How to Be Sick has won two 2011 Nautilus Book Awards: A Gold Medal in Self-Help/Psychology and a Silver Medal in Memoir. It was also named one of the best books of 2010 by Spirituality and Practice.  My new book, World of Joys, World of Sorrows, will be published in the Fall of 2013. 
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