How to Live Well with Chronic Pain and Illness

by Toni Bernhard

  What I say in that chapter applies here too: some people may never accept that we’re disabled by an invisible chronic illness. That inability on their part is about them, not us. They may not have had previous experience with people who are sick or in pain. It may scare them and remind them of their own mortality. In addition, they may never have learned how to be compassionate toward others. The kindest thing we can do for ourselves when this happens is to accept that disappointments like this are an inevitable part of life and then wrap ourselves in a cloak of self-compassion over any suffering we’re experiencing as a result of their lack of understanding.

  In those moments when I accept that some of the people I know may never understand what life with chronic illness is like for me, I’m able to let go of the painful longing and fruitless desire for them to behave as I want them to. It’s like putting down a heavy load because I’m finally giving up a fight I cannot win. This gives rise to equanimity — that calm sense of peace and well-being with my life as it is, whether others understand it or not.

  18

  When You and Those You Love Are in Conflict

  Attention is the rarest and purest form of generosity.

  — SIMONE WEIL

  CHRONIC ILLNESS is one of life’s most stressful experiences, so it’s not surprising that it can put a strain on the closest relationships — romantic partners, family members, even best friends. As noted at the end of chapter 1, some of our loved ones may be unable to give us the kind of support we’d like to have, and it’s essential to our peace of mind to work on accepting this with grace. Even with these people, however, it’s possible to resolve conflicts that arise in our day-to-day life together. This chapter offers several techniques for doing this.

  Initially, it may seem unfair that we who are coping every day with chronic illness have to take the lead in resolving conflicts with loved ones. If we look at the relationship from a different perspective, however, we’ll realize that the people to whom we’re closest are suffering right along with us. In my view, my husband has suffered as much as I have as a result of my illness and how it’s turned upside down the life we expected to be sharing.

  I think he’d disagree, saying that he doesn’t have to live day in and day out with a body that’s sick. And yet I’ve watched how hard it is for him. In addition to his ongoing worry about my health, he’s taken on many extra responsibilities — and lost his partner out in the world. To me, he and I are in the same boat, and so if a conflict arises, I see no reason why I shouldn’t be the one to try and help our relationship be as good as it can be.

  Before reading these suggestions, you might think of a sensitive subject or current conflict that you’d like to raise with a loved one, whether that loved one is a partner, a family member, or a close friend.

  Stick to the issue at hand.

  A discussion about a conflict often starts out well, focusing on the issue at hand, but there’s a tendency to drift. Suddenly, the discussion is about all the grievances in the relationship. When this happens, nothing is likely to be resolved.

  Using mindfulness skills can help you keep the discussion on track. First, be sure it’s clear in your mind exactly what the issue is. Then, before starting to speak, take a conscious breath or two to calm yourself and gather your thoughts. When you’re ready, communicate to your loved one the one thing you’d like to work on resolving. For example, you might say: “I know we have several conflicts we could discuss, but can we focus on solving our disagreement about how to put the children to bed at night?”

  At any point that the discussion drifts off-topic, take the initiative and return to the conflict you’re trying to resolve. Focusing on one issue at a time increases the likelihood of coming to an agreement that’s satisfactory to both of you.

  Talk about how you feel, as opposed to what you think your loved one should be doing or not doing.

  This suggestion comes from a technique I learned many years ago in one of my child-raising books. It’s called sending “I-messages” instead of “You-messages.” The idea is to try and avoid the use of the word “you,” which makes the other person feel as if he or she is being accused of something. So instead of using phrases such as “you should” or “you shouldn’t,” stick to talking about your own feelings.

  As an example, if a loved one doesn’t do something he promised to do, instead of saying “You didn’t do what you said you’d do” or the even more confrontational “You never do what you say you’ll do,” say something like “I feel frustrated.” Expressing how you feel is much less likely to turn a disagreement into an argument because you’re not blaming your loved one. You’re simply explaining how you feel at the moment. In addition, it’s easier to hold your ground; you feel the way you feel. No one can deny that.

  Here are two more examples of how using “I-messages” can help resolve conflicts.

  1.The conflict: Whenever you ask a loved one for help around the house, he or she gets upset, and you wind up in an argument. The other person could be your partner, a child, or a sibling.

  In this situation, when talking to your loved one, instead of saying “You should help more” or “You shouldn’t get mad just because I ask for help,” focus on your feelings by sending an “I-message.” Try saying something like this: “I’m worried because I’m unable to handle all the household tasks. Could we make a list of things that need to be done and then divide them up in a way that looks manageable for both of us? We can revisit the list in a few days to see if it needs adjusting.”

  2.The conflict: When you’re in bad pain, your loved one ignores you, as if it can’t possibly be that bad.

  In raising this, instead of sending a “You-message,” such as “You should believe me when I say I’m in pain” or “You shouldn’t ignore me when I’m in pain,” focus on how it feels for you to have your pain disregarded. Try saying something like this: “On days when I’m in terrible pain, I feel bad that I don’t know how to let you know how much I’m hurting. Can we discuss how I can talk to you about my pain levels in a way that would feel comfortable to you?”

  Learning to speak this way takes practice, and it may feel awkward at first. Most of us are in the habit of communicating by using “You-messages.” I certainly am. In addition, an “I-message” can inadvertently or intentionally be a disguised “You-message.” In the above example about pain levels, if you’d said, “I feel bad that you refuse to acknowledge my pain,” your comment would have started out as an “I-message” but quickly turned into a “You-message.”

  If you try the technique and don’t get the wording right, it’s okay. From the heart, say, “I’m sorry”: “I’m sorry. Can I take back what I said and try to say it in a clearer and more helpful way?”

  Put yourself in your loved one’s shoes.

  Putting yourself in the other person’s shoes helps resolve conflicts because it breaks you free from the stubbornly held position that the only solution is for your loved one to see things your way. When your mind gets stuck in “my way is the only right way,” conflict resolution becomes virtually impossible, partly because that mindset often gives rise to anger. In fact, “I’m right and you’re wrong” is a common theme underlying anger.

  Understanding a conflict from the other person’s point of view helps you see that a seemingly callous or indifferent reaction to the difficulties in your relationship does not automatically mean that your loved one doesn’t care about you. Instead, it may reflect his or her worries and fears about your medical condition — a reaction that stems from love and concern for you. Understanding this makes it easier not to take your loved one’s behavior personally.

  The best way to see the conflict from your loved one’s point of view is to engage in “active listening” (also called “empathetic listening”). This is a technique I learned when my two children were young. Even though I wasn’t always as skillful at it as I wanted to be, it was extremely helpful to them at times. The goal is to let the other person kn
ow that you’ve truly heard his or her concerns. To do this, you feed back to your loved one, in your own words, what you think he or she is feeling.

  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, your daughter feels heard and validated. This makes it easier for her to overcome a fear because she knows you’re taking her concern seriously, and she knows that you’re trying to understand it from her point of view.

  This technique is equally effective in the context of chronic illness. It’s not uncommon for family members to be struggling with the upheaval in both of your lives, not to mention worries over issues that may have become more pressing and serious as a result of your illness, such as finances, isolation, and what the future holds.

  For example, perhaps you want your partner to accompany you to doctor appointments, partly for support and partly so that he or she can learn more about your medical condition and the challenges you face. If your partner refuses to go, your first reaction might be to assume that he or she doesn’t care enough about you to be bothered. And yet the very opposite might be true: your partner may love you so much that it’s too hard to be a witness to your suffering.

  To actively listen in this situation, you demonstrate to your partner that you understand how he or she feels by putting those feelings into your own words: “I understand why you might prefer not to come with me to the doctor. You’re so busy with other things, and it’s not a particularly pleasant experience for you anyway. I think that if you came, though, we’d both have a better idea of what’s going on with my health. Then we could work on making life as easy and pleasant as possible for both of us. What do you think?” Then listen carefully to what he or she says.

  When you actively listen in this way, loved ones feel heard and validated; they see that you’re not challenging their point of view. Instead, you’re making an effort to understand it. This makes it more likely that you can talk openly together about the conflict at hand.

  In those moments when I’m able to put myself in my loved ones’ shoes and see my illness through their eyes, compassion arises for them. If this happens to you and makes you want to reach out — do. A hand on a hand, a rub across the back, a hug can do wonders to alleviate tension when two people are in a conflict. The slightest show of affection can break a deadlock, and then you can begin anew. Every moment is a chance to begin anew. Often both people in a conflict want this to happen, but no one wants to be the first person to reach out. If you can, be that person.

  Know thyself… and then try something different.

  When raising sensitive subjects with a loved one, you can communicate more effectively if you know your own tendencies when you’re in a conflict situation. Are you quick to get angry? Do you start yelling, or do you withdraw and become very quiet? Do you get sarcastic? Are you “the nice one” who always wants to accommodate others in any way possible because you don’t like conflict or are afraid of it?

  Set an intention to become mindful of how you respond when you’re in a conflict with someone. It might not be obvious to you at first, so take some time and see if you can pinpoint your behavior.

  You can use this bit of self-knowledge to help break down communication deadlocks that tend to arise when the subject you’ve raised is a sensitive one. By switching your usual mode of behaving, you can avoid the established ruts of your relationship. And when your loved one witnesses this unfamiliar behavior from you, he or she is more likely to pay careful attention to what you’re saying. So if you tend to withdraw, instead speak up. If you tend to get angry, instead resolve to stay calm. I’ll share my experience with this technique so you can see why I recommend it.

  The more upset I get about something, the more I tend to lower my voice and speak quietly. I didn’t realize this until a friend pointed it out to me years ago as she watched me handle a conflict with my toddler son. When I do this, I appear calm on the outside, but it’s a fake calm; inside, I’m tense and upset.

  When I read about this tactic of switching your behavior, I decided to give it a try. The next time I found myself in a conflict with a loved one, I made a conscious effort to speak up. I didn’t start yelling — that’s rarely a good way to communicate — but I raised the volume of my voice. I was so astonished to hear myself speaking up in this way that I found myself being much more articulate in communicating my concerns about the conflict at hand.

  In addition, I noticed that my loved one was taken aback. He sat up a bit straighter and paid more attention to what I had to say. The conversation that followed was constructive and productive; to my surprise, we resolved the problem quite easily.

  Look upon compromise as a positive outcome.

  Don’t go into a discussion of a conflict with the attitude that one of you will “win” and one of you will “lose.” Not only is this likely to leave bad feelings, but it’s not necessary for resolving most conflicts.

  To illustrate this point, let’s go back to one of the conflicts I mentioned: putting the children to bed at night. A good way to resolve the conflict might be for each of you to give in a bit on what you think is ideal. If you’re disagreeing over the time to set for their bedtime, you could agree to compromise. Or you could compromise over the bedtime ritual, such as how many books you’ll read to them.

  Compromise might also be an effective way to resolve the conflict over wanting a partner to accompany you to a doctor’s appointment. You could agree that he or she will come every other time or whenever you indicate that something important will be discussed at the appointment.

  If you can resolve a conflict by each of you giving in a bit or by coming up with a new alternative that meets both of your needs, then you’ve done more than just resolve the issue — both of you have come away from the discussion feeling respected by the other. This is good for the overall health of your relationship. To quote the Vietnamese Zen monk and teacher Thich Nhat Hanh: “In true dialogue, both sides are willing to change.”

  The stresses that chronic illness can bring to close relationships makes the challenge of finding peace with your new life even more difficult. Although the techniques in this chapter take practice, in my experience, they’re worth the effort. I’m not suggesting that they’ll magically resolve all the conflicts you have with those you love. And if you’ve reached an impasse over a serious conflict, you might consider professional counseling; the presence of a neutral third party in the room can facilitate more calm and constructive communication.

  It’s also okay for some conflicts to remain unresolved. Close relationships can thrive even when there are disagreements, so long as each of you respects the other’s point of view. The best way to be sure you’re doing that is to practice being mindful of how each conflict appears in the eyes of your loved one.

  19

  The Special Difficulties Faced by Young People Who Are Chronically Ill

  It takes courage to grow up and become who you really are.

  — E. E. CUMMINGS

  BEFORE I BECAME a member of the community of the chronically ill, I thought that young people — at least through their thirties — were either healthy (aside from the occasional cold or flu) or had a terminal illness. I had no idea that millions of young people live day-to-day with chronic illness. They suffer from symptoms that, while not necessarily life-threatening, affect every aspect of their lives: unrelenting pain, debilitating fatigue, shortness of breath or vertigo, damage to vital organs such as the lungs and kidneys. Many of them have spent a good part of their childhood and young adulthood in medical settings; some have undergone multiple surgeries.

  This chapter focuses on the difficulties faced by young people with chronic illness, although much of it can apply to people of any age.

  Being treated as i
f your medical problem can’t possibly be chronic.

  In this culture, the words “young” and “acute illness” appear to go together, but “young” and “chronic illness” do not. Young people tell me that family and friends often treat them as if they can’t possibly have a medical condition that might last a lifetime. This leaves them feeling frustrated, hurt, and sad.

  When young people are disregarded in this way, they may even begin to question their own perceptions: “Am I really in pain all the time? Everyone says it can’t possibly be the case, so maybe it’s all in my head.” This self-doubt can lead to self-recrimination and can seriously erode a young person’s sense of self-worth. Many of them have told me that the greatest gift a loved one could give them would be to say, “I believe you.”

  In addition, young people face discrimination by the population as a whole, especially if their illness is invisible — as is often the case. Several young people have told me that they’ve been openly challenged when they park in a disabled spot, even though they have the required placard or sticker. (By contrast, no one has ever challenged me.)

  If a stranger is rude to you in this fashion, the best response is to acknowledge to yourself that you feel hurt, take a deep breath, and then immediately turn your attention to taking loving care of yourself. Don’t let another person’s insensitivity make you question yourself. The problem lies with that person’s ignorance about chronic illness; it does not lie with you. Make a commitment to become your own unconditional ally. This is the essence of self-compassion. With practice, it can become a lifelong habit. Start by separating this person’s behavior from what you know to be true about yourself. In other words, you know you’re sick; you know you’re in pain. Let that be good enough for you.

  It saddens me every time I hear about a young person who is chronically ill being challenged by other people. Everyone should be given the benefit of the doubt. No one is too young to suffer from chronic illness.