A Few Words...

What is written here is my opinion and personal experience only. I am not qualified to give advice - medical, legal, or otherwise. Please be responsible and do your own research regarding treatments, diets, doctors, and alternative therapies.

Thursday, July 5, 2012


I haven't had much time nor the inclination to create a blog post from scratch lately but, as I come across the great posts of others, I feel compelled to share them.  Here's one from a fellow chronic disease sufferer who is "Turning Straw into Gold".  This is a very articulate explanation of what wonderful things to say to a person who is either partially or totally disabled by an illness.

What Those With Chronic Pain or Illness DO Want to Hear You Say

Here’s what the chronically ill wish you’d say to them.

As a follow-up to last week’s piece, "What Those with Chronic Pain or Illness DON’T Want to Hear You Say", I thought it might be helpful to let others know what we wish they would say to us.
“You look so good, but how are you really feeling?”
It’s hard for us to respond to comments like, “You look so good” (or the always dreaded, “But you don’t look sick”) because we know that you’re just trying to be nice. If we respond truthfully with, “Thanks, but I feel awful,” you might be embarrassed or think we’re being ungrateful. It would be such a relief to be asked a question that goes to the heart of the matter: “How are you really feeling?”
“I’m going to the grocery store, can I pick anything up for you?”

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This is a helpful question, as opposed to, “Call me if there’s anything I can do” (from last week’s piece). As I said there, we’re unlikely to respond to such an open-ended offer, meaning we won’t call and say, “Can you go to the grocery store and get me some dish soap?” We don’t want to make you go somewhere that you aren’t otherwise going. But if you let us know that you’re already going to the store, that’s a different matter entirely!
In fact, the more specific your offer of help, the better. For example, we’d love to hear an offer to do one of those life tasks that back up for us because we’re not well enough to get to it: take our car for an oil change (we’ll pay for it!); weed in our garden for a bit; do a load of laundry; even clean our refrigerator.
“It must be hard to be sick and in pain all the time,” or “Not being able to work must be so frustrating,” or “I imagine it’s a daily grind to have to pace yourself so carefully.”
These comments are examples of “active listening,” a child raising technique I learned when my two kids were young. I wasn’t always as skillful at it as I wanted to be, but the idea is to let your kids know you’ve really heard their concerns by feeding back to them, in your own words, what they’ve said.
For example, if your daughter is afraid of the dark, instead of trying to talk her out of how she’s feeling by saying, “There’s no reason to be afraid of the dark,” or “You’re too old to be afraid of the dark,” you feed back her feelings to her by saying, “The dark is scary to you.” When you actively listen in this way, children feel heard and validated. This makes it easier for them to overcome a fear because they know you’re taking their concern seriously and that you’re trying to understand it from their point of view. We who are chronically ill want to feel heard and validated. We want to know that you understand how we feel. In fact, everyone—sick or not—wants to know that others understand them!
To active listen, put yourself in another’s shoes and think about how you’d feel if you were in his or her circumstances. Then feed those feelings back by saying, for example, “You must feel sad and disappointed that you can’t go to the party.” I hope all of you have experienced the relief that comes from feeling deeply listened to.
“How are you holding up? Do we need to stop visiting so you can rest?”
What a blessing it would be to hear a visitor offer this “prompt.” I’ve lost count of the number of times my body was telling me to lie down, but I didn’t excuse myself. Even if we’re wilting away or are in bad pain, most of us are unlikely to bring it up ourselves because we don’t want to let you down. But if we know you’re aware of and sensitive to our limitations, we’ll respond honestly.
“I miss going out to lunch together,” or “I miss going to the movies with you,” or “I miss going to the mall together.”
Speaking personally, I want to hear a heartfelt expression of the way you feel about how things have changed for us. It lets me know that you value our relationship.
“Don’t feel bad if you have to cancel our plans at the last minute. I’ll understand.”
What a relief this would be to hear! I used to force myself to keep commitments even if I was too sick to leave the house. Invariably, it led to a bad “crash.” I’m much better now about cancelling plans if I have to, but I still feel bad about it unless those plans were made with one of my “it’s okay to cancel” friends. I treasure them.
“Would you like to hear about this crazy adventure I had yesterday?”
You bet I would! Some friends don’t want to tell me about what they’re up to, especially if it’s something exciting. They think that talking about their lives will make me feel bad since I’m so limited in what I can do. But hearing about another’s adventure makes me feel connected to the world and adds real-life adventure to what I often just have to get off the TV.
“I hope you’re as well as possible.”
To those of us living day-to-day with health challenges, this comment is so spot-on that many of us just use the initials AWAP when communicating with each other, as in, “I hope you’re AWAP.” Reflecting on this, wouldn’t it be a compassionate comment to make to anyone? Everybody has his or her share of stresses and sorrows—in sickness andin health. And so, my wish for everyone reading this piece is that you’re AWAP.
Is there something you wish friends or family would say to you? Please feel free to share it with others the comments section.
© 2012 Toni Bernhard
I'm 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
I appreciate your shares on Facebook, Twitter, etc. You can also click on the envelope icon and email the piece to others. Thanks!


  1. I have a friend who calls me whenever she's at Trader Joe's or Walmart to ask if there's something she can pick up for me. It started when I had my last attack, and I think she just enjoys doing it even though I'm not sick at the moment. If I DO get sick, she just picks stuff up without even asking!I love this list and it's good to know I've been blessed with good friends.

  2. Thanks for your words... Is there anything you've tried that helps? I'm fairly new to this disease and I'm just wondering if there is anything you've tried that you could share... I guess im just trying to make sense of this "random" attacks...

  3. Thank you, Rocko, for visiting my poor, neglected blog. A couple of suggestions might be to get a book/download called Guidebook for Meniere's - it is a very thorough, well-referenced source of information. You can find it here:


    If the link doesn't work, just search Guidebook for Meniere's at Amazon. It is available in book format or Kindle. I think you can even get it in PDF directly from the publisher's website.

    Another, much less formal, resource is www.menieres.org. It's a sometimes rowdy, but generally supportive, forum with a lot of long-standing members who've been through it all.

    Hang in there, this is a bummer of a disease, but many of us have found treatments that have helped us continue to live our lives pretty normally. In fact the reason I haven't had much time to post lately is because I've been working 4 days a week, raising our 3 kids, and living life to its fullest. I feel rotten a lot of the time, but I am functioning and don't deal with the worst of the vertigo like I used to thanks to gent shots.

    See you around,

  4. Hello my dear.
    I don't know how I missed your last few post...and they were months ago...so where are you now? Are you doing ok? I've been missing you!

    I love the articles you've been quoting. I read Turning Straw into Gold often. Loved her book...I think you knew that.

    And I LOVE the article about how people feel when they have Meniere's. I think I may repost that on my blog, if you don't mind.

    Tis the season to be too busy to do anything, but don't forget about us....drop by and let us know how you are.


  5. Hi Wendy!

    Yes, I am long overdue for a new post. The good news is that I've been too busy to blog, though I do have quite few things I'd like to write about, so maybe I'll carve out some time to at least jot down some short entries.

    I HAVE been following your recent posts. So glad you made it to Arizona safe and sound, though hate that you had a bad attack once you got there. Ugh. I hope the milder climate does you good, though, in the long run.

    Thanks for stopping by to comment. This and the subject of my next post have motivated me to write.