Chronic pain – do’s and don’ts

Chronic pain is a health issue for many of us with unseen disabilities. There are a variety of reasons for chronic pain, but the effect for nearly everyone is reduced energy, depressed mood, and curtailed activity.

Generally accepted pain scale diagram

From Toni Bernhard in Psychology Today:

Be it back pain, headaches, joint pain, or fibromyalgia, chronic pain persists and persists, with no end in sight. Some 30 million Americans suffer from some form of chronic pain, which is influenced by many factors, including one’s emotions and memory.

What Chronic Pain patients would like to hear:

“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?”

This is a helpful question, as opposed to, “Call me if there’s anything I can do”. 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, everybody—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?

What chronic pain patients don’t want to hear:

“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.