How to Live Well with Chronic Pain and Illness

1. Educating Family and Friends about Chronic Pain and Illness

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Educating Family and Friends about Chronic Pain and Illness

The only way to make sense out of change is to plunge into it, move with it, and join the dance.


WHEN CHRONIC ILLNESS initially strikes, it feels like a crisis. Family and friends are scrambling to adjust to the many sudden and unexpected changes in your life. They may be confused about why you’re not recovering. Family members, in particular, may also be frustrated over their inability to make you better and may be worried — even scared — about what the future holds.

As the months go by and the feeling of being in a crisis subsides, you may find it difficult to convey to family and friends what your day-to-day life is now like. Unless they’ve experienced it themselves, it’s difficult for people to fathom the debilitating effects — physical and mental — of unrelenting pain and illness. Usually, the only person who truly understands is a caregiver who sees you all day long. (I’ve watched many a friend give me a blank look 8when I share that I feel as if I’ve had the flu, without respite, since 2001.)

I’ve learned that the burden is on me to make my medical condition visible to family and friends, especially because my chronic illness, as is often the case, is invisible. If I don’t make the effort to educate them, their expectations of me may be way out of line with what I can handle.

In addition, educating those I’m closest to eases the emotional distress that accompanies feeling misunderstood. In the middle of Thanksgiving dinner in 2013, I had to get up from the table mid-meal because I was too sick and in too much pain to continue to sit upright. Despite this, I felt okay about leaving without explanation (which meant I didn’t interrupt the ongoing conversation), because I knew that my husband, my son, and my daughter-in-law would know exactly what was going on with me. Although there were others at the table who may have thought it odd that I suddenly disappeared, knowing that these three understood gave me the courage to get up and take proper care of myself — and allowed me to do so without adding mental suffering to the physical suffering I was already experiencing.

Here are several suggestions for helping family and friends understand what your life is like. If you’re reluctant to try talking with them, I recommend following Alan Watts’s suggestion from the epigraph that begins this chapter: plunge into it. The changes in your life have already taken place, so you might as well do what you can to help those you love “join the dance.”

Share information with them from the internet or other sources.

A good way to educate family and friends about chronic illness is to use a third-party source, such as the internet or a book. If you and a particular friend or family member have unresolved emotional issues or conflicts, using a neutral third party to convey important 9information keeps the focus on the issue at hand — educating the other person about your chronic illness and its effect on your life.

A quick search of the internet will yield a host of associations and organizations devoted to every conceivable medical condition. Select a few pages to print out, or forward a few links to family and friends. If you have a book that contains information you’d like them to know, buy them a copy or, alternatively, photocopy relevant pages. When you send them what you’ve chosen, I suggest enclosing a short note that’s light in tone but also lets them know it’s important to you for them to read what you’re sharing. To keep it light, you could joke that “there won’t be a test!”

Communicate in writing.

Many years ago, two friends of mine were in couples therapy. They were unable to talk to each other about their marital problems without one of them shouting recriminations and the other shutting down emotionally. The therapist told them that, instead of trying to speak to each other about the conflicts in their marriage, they should try to communicate by writing letters to each other. It turned out to be a major first step in healing their relationship.

If you feel at an impasse with a friend or family member, or simply feel uncomfortable talking to the person in question, consider writing a letter or sending an email. Be sure it’s not accusatory. In composing it, use the word “I” more than the word “you.” Describe your day-to-day life with chronic illness, explain what a difficult adjustment it’s been for you, and convey how much you wish you could be as active as you once were.

You might also explain that the way you’re going to feel on any given day is unpredictable, and that this means you can’t be sure if you’ll feel okay on a day when you’ve made plans to see other people, no matter how much you’ve rested in advance. In chapter 34 on setting the record straight, I write in detail about this 10particular misconception: people assume that with enough rest, we can always keep our commitments. In my experience, the hardest concept for most family and friends to comprehend is that we can spend weeks in “full rest mode” before a visit or a gathering but still be virtually nonfunctional when the day arrives.

I suggest concluding by going over what your friend or family member might expect when the two of you are together. For example, you could say that, as much as you wish you weren’t limited in what you can do, you may not be able to visit for as long as you’d like. In my experience, spelling out my limitations ahead of time is helpful, not just to others, but to me, because it’s much easier for me to exercise the self-control it takes to bring a visit to an end if I’m aware that the person I’m with already knows this is a very real possibility.

A final point. If you decide to communicate by email, be sure not to click “send” in haste. I recommend that you print out what you’ve written and review and edit it before sending it off. When I read over a hard copy of what I’ve drafted on the computer, I almost always find that the tone isn’t quite right or that it lacks one or more subtle distinctions I was trying to convey.

Ask an ally to help you educate others.

If you find it too hard to talk to family and friends about your medical condition, think about whether there’s someone in your life who truly understands what you’re going through. Then ask that person to help you explain to others what life is like for you. Think long and hard before you conclude that there’s no such person in your life. Your ally might be a friend or family member who’s just waiting for you to enlist his or her help.

Once you’ve found your ally, you could ask him or her to talk with others on your behalf or to be present with you when you talk with them. Having a third party involved like this facilitates 11good communication; it can magically turn family and friends into careful and compassionate listeners.

If your ally is present at a gathering with you, ask him or her to be supportive if you have to leave early or go lie down. You could even ask your ally to let you know if you’re “wilting,” as my husband calls it when he sees that I’m pressing on even though my energy stores are depleted. It’s so helpful for me to be prompted by him because going beyond my limitations causes adrenaline to kick in. This fools me into thinking I’m doing fine, but using adrenaline to get by sets me up for a bad crash later on.

Work on accepting that some people you’re close to may never treat you the way you’d like.

I used to spend my limited energy going over and over my grievances about how some of the people in my life treated me. “She never asks how I’m doing.” “He never acknowledges my limitations.” “She’s never asked me to explain my illness.” Then one day I realized that the true source of my unhappiness wasn’t what they were saying or not saying; it was my intense desire for them to behave the way I wanted them to. I had thought that the suffering I was experiencing was caused by them, but it wasn’t. It was coming from my own mind.

The fact is, you rarely know why people behave the way they do. A friend who never shows an interest in being educated about your illness may behave that way because she assumes that if you wanted to talk about it, you’d bring it up. It’s also possible that your medical condition triggers her own fears about illness and mortality, or that she’s too caught up in problems of her own (medical or otherwise) to be able to take the time to educate herself about your health. Just as you can’t force people to love you, you can’t force people to behave the way you want them to.

When I feel let down by a friend or family member, I cultivate 12equanimity, mindfulness, and compassion. These three practices stem from my years of immersion in the Buddha’s teachings, not as a religion, but as a practical path for finding peace with my life as it is.

I recommend that you start with equanimity. With practice, cultivating the evenness of temper that characterizes equanimity can help you feel at ease in the midst of life’s inevitable ups and downs, successes and disappointments. This calm and balanced state of mind paves the way for accepting that some people will treat you the way you want and some won’t.

I practice equanimity by recognizing that even though it can feel as if I’m suffering because of another person’s behavior, the true source of that suffering is my own wanting mind. And even though I can still feel hurt by a friend or family member’s seeming lack of understanding or interest in my health, I don’t actually know what’s going on in that person’s mind. In the end, my sense of well-being depends on my ability to accept that other people’s behavior rarely conforms to the ideal I’ve mocked up in my mind.

Mindfulness and self-compassion are also essential tools for making peace with family and friends whose behavior isn’t as supportive as you’d wish. If you’re angry, frustrated, or hurt — or any combination of painful emotions — first mindfully acknowledge that this is how you feel. Pretending that you’re not feeling what you’re feeling tends to intensify whatever emotions are present, so do your best to fearlessly turn your attention to what’s going on in your mind at the moment. Then allow compassion to arise for any suffering you’re experiencing due to the presence of painful emotions. In my view, there’s never a good reason not to be as kind to yourself as you’d be to a loved one in need.

Next, reflect on how there are many possible reasons why your friend or family member is not giving you the support you’d like to have. These reasons could be related to his or her own conditioning, 13life history, and current concerns — and the stressful emotions that can accompany all three. It’s not about you, so remind yourself that there’s no reason to take it personally when someone resists your attempts to educate him or her about your health struggles.

Finally, work on wishing the best for your friend or family member. More likely than not, he or she cares deeply about you but is simply unable at this point to be present for you in the way you’d like. Understanding that others have their own “demons” can lead to compassion arising for them, even though they’re letting you down. Compassion for others tends to ease your own emotional pain because it takes you out of your self-focused thinking.

As you experiment with these practices, be patient. Don’t blame yourself if it’s too hard at this point in your life to feel compassion for a friend or family member who is disappointing you. Instead, give yourself credit for having had the courage to plunge in and try.

My heartfelt wish is that your family and friends will be open to understanding and accepting what life is like for you, but that if they aren’t, you’ll be able to accept them as they are without bitterness.

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