Painting by Carl Larsson
Source: Public Domain
I hope the day will come when chronic illness (which includes chronic pain) is recognized as a normal—and inevitable—part of the human life cycle. I also hope the day will come when people understand that chronic illness can settle in at any age. It’s not reserved for those in their later years; this is true of mental illnesses too, such as depression and PTSD.
I have a friend in her 60s who has suffered from a serious autoimmune disease since she was a pre-teen. She’s been in and out of hospitals all of her life. For over 50 years, she’s had to live with people making assumptions about her that are wrong.
I hope this piece will help dispel some of those assumptions. Each situation is different, so some of what follows may not apply to everyone. That said, over the years, I’ve found that those of us who live day-to-day with chronic illness have a lot more in common than I’d realized, no matter where we live on this planet.
Here are five assumptions I’d like to see become relics.
1. Don’t assume that what you see or hear reflects how a chronically ill person feels.
Many people who are chronically look or sound fine, even those who are in pain. This leads people to say to us, “You look great!” (or words to that effect). This type of comment puts us in a bind. We don’t want to be rude and say something like, “Well, I don’t feel great,” because we know the person is just trying to be nice. I’ve been chronically ill for over 17 years and I still sometimes struggle with how to response to those “you look great” type of comments.
If you’re with someone who is chronically ill, I suggest you say something like this: “You look good, but how to you really feel?” or “You look good, but are you in pain today? If so, I’m sorry.”
We appreciate it so much when someone doesn’t assume that our external appearance reflects how we feel inside. I used to make that assumption but I don’t anymore. In this sense, being chronically ill has helped me be more understanding of others.
2. Don’t assume that someone who is chronically ill feels well enough to be talkative.
This erroneous assumption can especially be a problem during in-person interactions or phone calls. Being chronically ill, physically or mentally, is a tremendous energy drain. And, many of us have bodies in which our “batteries” never fully charge overnight in the first place.
For these reasons, many people who are chronically ill prefer to communicate by email or text; it allows us to respond at our own pace and when we feel well enough. Finding it so hard to socialize is a sad “side-effect” of struggling with our heath because in-person conversations, even over the phone, tend to be more intimate and personal than emails or texts.
If you’re visiting with someone who is chronically ill, I hope you’ll be sensitive to the fact that he or she may have trouble being an equal participant in the conversation. And I hope that will be okay with you.
3. Don’t assume that someone who is chronically ill doesn’t want to hear all about what you’ve been up to.
I like to hear what friends and family have been doing out there in the world. It’s uplifting, partly because it allows me to take a break from focusing on my own health struggles. And yet, sometimes, I can tell that others don’t want to share because they think I’ll feel bad that I have to miss out on so much.
In addition, I’ve learned to enjoy trips and activities, vicariously, by hearing about them from others. In the early years of my illness, I didn’t want to hear about others’ active lives, but I do now. A good friend of mine just took a four week trip to Ireland, Iceland, and Denmark. (We both live in Northern California.) When she returned, I wanted to hear all about her adventures and look at the photos she took.
If you are going to visit with someone who is chronically ill, I recommend that you “test the waters,” perhaps by asking “Would you like to hear about my trip [or the wedding I just went to], or would you rather talk about something else?”
4. Don’t assume that someone who is chronically ill is comfortable talking about his or her health.
Some people who are chronically ill need someone with whom they can share their ongoing health struggles. Others want to avoid the subject altogether. They may find it embarrassing to talk about. Or they may fear that their health concerns will be disregarded, or that friends and family will minimize what’s going on with them and think they’re exaggerating.
This reluctance to share stems from our prior experiences with doctors and with friends and family who simply don’t understand what we go through every day. For example, we often find that others mistake the severe fatigue that can accompany chronic pain and illness as nothing more than our being tired. They also don’t understand that many of us can sleep for 10 hours at night and still not wake up refreshed. And they often don’t understand the effort it can take for us to just keep our bodies clean and nicely groomed—how that alone can use up our energy stores for the day. As a result of feeling repeatedly misunderstood, some people who are chronically ill find it easier to avoid the topic of their health altogether.
So, knowing that that your friend or family member might not want to share, be ready to say something along these lines: “I’d like to know how you’re doing with your health, but I understand if you’d rather talk about something else.” (For more on what to say to those who are chronically ill, see my piece: “What Those With Chronic Pain or Illness Want to Hear.”)
5. Don’t assume we’re unhappy just because we struggle with our health.
I don’t know anyone who is happy all the time, but don’t assume that those of us with chronic illness are unhappy all the time! Most of us have worked hard to make peace with our situation.
One way we’ve done this is to master the “work-around.” If we’re too sick or in pain to see those we love in person, we’ll try to FaceTime or Skype with them. If it’s too hard to do that (it’s very difficult for me), we’ll use email or texting in a conversational way so it feels as if we’re chatting with those we care about the most.
People tell me they’ve found one particular quotation to be helpful as they work on finding a measure of peace and happiness in life. It’s in my book How to Be Sick, and is from Zen teacher Charlotte Joko Beck: “Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems. It’s just our life.”
Yes, it’s just our life. Please don’t assume that chronic illness has ruined it or that it’s stolen any chance for us to feel content and to be happy.
Thank you so much for reading this. I hope you’ll share your thoughts in the comments section below.