Coping with Chronic Illness…Compassionately

Although Toni Bernhard’s book is called How to be Sick, I found it a lovely and poignant read on how to live, regardless of one’s health status.

Toni was a law professor at the University of California–Davis when she became ill on a trip to Paris in 2001. At the time, she was diagnosed with an acute viral infection–“the Parisian flu” they called it. Unfortunately, she never got better. Amazingly, she wrote How to be Sick from her bed using a laptop. The book won the 2011 Gold Nautilus Book Award in Self-Help/Psychology and was named one of the best books of 2010 by Spirituality and Practice.

Toni has not recovered her health, but her spirit remains strong. She writes regularly for Psychology Today and generously donates her time and wisdom. I was so excited when she graciously agreed to be interviewed for my blog.

When do you accept your pain or health condition as is, and when do you keep trying new approaches?

In my opinion, we have to do both. Acceptance is not the same as indifference or resignation, which carry aversion with them. Acceptance to me is an opening of the heart to the difficulties we face and being able to say, “This is how things are right now” even if “how things are” is difficult. I try to accept how I am AND continue to pursue new treatments. But I’ve learned a lot in the past eleven years about having to pick and choose skillfully among those treatments.

First, of course is the cost. I’ve spent so much money on failed treatments that it’s been a strain on our budget. At the point when the strain outweighs any benefit I can foresee, I stop (I did this recently with the third Chinese herbalist, even though he’s one of the most respected herbalists in the world).

Second, I’ve had to learn to not just jump at every treatment option, but think about it carefully and see if it’s at all reasonable. I used to try everything. Now, I’m very careful.

So, you have to find a middle way — but to me, acceptance of how you are now AND continuing to pursue treatments are not in conflict with each other.

I have also gone through periods where I’m just too exhausted to keep an eye out for treatments. I just retreat, as if I’m in hibernation, and that seems to be good for me sometimes too.

How do you have self-compassion when you’re feeling sick and tired?

I always tell people that the single most important thing they can do is to be kind to themselves. I look at it this way. We control so little in our lives, but the one thing we can control is how we treat ourselves. I see no reason for us not to be as kind and gentle with ourselves as we can be. It’s not our fault that we have health problems. We’re in bodies and they get sick and injured. It will happen to everyone. This is how it’s happening to us. I’ve had so many people write to me and say the single most important thing they got out of my book was to give up the self-blame and forgive themselves for being sick or in pain. Many people have said they didn’t even realize they hadn’t forgiven themselves until they read How to Be Sick. Those emails always touch me so much — just to know I’ve been of help to them.

I really think it helps to speak to yourself with words of self-compassion — to find just the right words for the moment: “It so hard to be sick yet another day.” I said to my husband yesterday, “I’m sick of being sick.” But, instead of “feeding” that thought with stories I spin: “I’ll never get well.” “I’ve been cheated of eleven years of my life,” I’ve learned to just let myself feel “sick of being sick” and speak to myself kindly about it. It’s natural for that emotion to arise so I try not to make it stronger by feeling it with worse-case-scenario stories. Instead, I’m just gentle with myself until the emotion passes — as it will.

How do you deal with uncertainty and unpredictability that goes along with chronic illness?

I use what I call “weather practice,” which I describe in my book. It was inspired by the movie, The Weather Man, which takes us inside the meteorologist’s craft where we see that the weather is unpredictable and ever changing. I use this as a metaphor for life. It helps me hold painful physical symptoms and blue moods more lightly. I can’t predict when they’ll arise but I know for sure that they’re just blowing through, like the wind. It makes it easier to wait them out. It applies to what happened yesterday when I suddenly got that “sick of being sick” feeling. I wasn’t expecting it to descend on me but it did. So I let it be there, knowing that it was an arising and passing mood. Sometimes, I do something particularly nice for myself — put on a movie — until the mood passes.

I also like to remind myself that uncertainty and unpredictability can work in my favor. We assume they’ll be a source of stress, but they could also mean that something unanticipated but wonderful is just around the corner. So, I like to remember that these two can be our friends.

How do you pace yourself (not doing too much on good days, then paying for it later)?

Now you’re asking about something I’m not very good at doing. I get off the hook a bit because my symptoms are pretty consistent from day to day — relentless you could call them. So for me, it’s not a question of overdoing it on a good day v. a bad day, but of overdoing it when something I enjoy is going on — like my son and his family coming up for the day from Berkeley. I try to pace myself but usually overdo it anyway. Then what do I do? Self-compassion again! There are some limits to which I can’t stretch myself, but visiting in the living room for longer than I should is one of them. And so I do it, and accept that paying the consequence was worth it.

How do you deal with anger?

I’ve been angry about my inability to be with my family more than I can. Sometimes, I do have to leave the living room and it’s hard to listen from the bedroom to all the laughter and good times I’m missing. But I’ve learned that getting angry doesn’t get me anywhere. It certainly doesn’t allow me to visit longer. All it does is increase our suffering.

Anger will arise. Don’t be upset with yourself for getting angry. It’s a natural response to your situation. The question is, how can you respond skillfully to it so as to minimize the suffering it causes. Here’s what I do. I note that it’s there, often by labeling it, “Feeling angry” or “This is what anger feels like.” I don’t get angry at myself for being angry — that’s just a judgment that makes the anger worse. In fact, I try to treat it like a guest I know well — an uninvited one perhaps, but still a guest. I find if I do this, it doesn’t fester and grow stronger. Then I look for what’s behind the anger. Almost always it’s some form of desire — I’m not getting what I want or I’m getting what I don’t want. It’s that “want/don’t want” I refer to in the book.

Just finding the desire that’s the source of the anger often loosens its grip on me, because I know, deep down, that we simply can’t fulfill all our desires and that if I continue to be angry about it, it will only make me more miserable and, in the end, won’t get me what I want. So, with this awareness that anger is present and that it’s because of a desire I can’t fulfill, I just let it be. Just sit with it. Just let it be until it gradually changes, weakens, and passes out of my mind. This is one of the ways in which the law of impermanence can be our friend!

Again, I’m so thankful to Toni for sharing her wisdom.  

To soak up more of Toni’s inspiration, click here.

Unique and the Same

I’ve had ideas swirling in my head all day. My thoughts seem random, yet connected. I’m not sure how to express them in a coherent fashion, yet I feel compelled to write.

I was talking to Greg about how sometimes I want to feel unique and special.  And yet, at other times, I want to feel I’m not alone. This dilemma makes me recall when I’ve been in therapy and the therapist tries to “normalize” my experience by saying, “I think everyone feels that way.” Sometimes this can feel validating, and at other times, it feels dismissive. Why is this?

Greg said it reminded him of a poster he once saw that says: “Remember that you are unique, just like everyone else.”

After this philosophical discussion, we ate dinner, not really talking. Thank goodness I’m married to another introvert who is comfortable with silence.

I still couldn’t figure out what I wanted to write, so I went downstairs to walk on the treadmill. I watch DVDs while I’m walking, and I’m on Season 2 of Mad Men. In the episode I was watching, Don Draper is having marital problems, and he is visiting with an old friend who offers some sage advice: “The only thing keeping you from happiness is the belief that you are alone.” What a great line! I thought this was surely a sign I needed to go upstairs and get busy writing.

Still, nothing came. I decided to do my meditation practice for the day.

This is week 4 of Sharon Salzberg’s Meditation Month and the focus is on Lovingkindness meditation. In this type of meditation, you focus not on your breath, but on certain phrases such as: May I be safe; May I be happy; May I be healthy; May I live with ease. You then extend these phrases (along with heartfelt intention if possible) to someone in need, then to someone you may know only casually, then to someone who you find difficult, then to people everywhere.  (For more details on this type of meditation, click here).

The person who popped into my mind when it was time to think of someone who may be in need was a previous client of mine. She had a child with a very rare and complex health condition. The condition wasn’t visible to others, so she was often given standard parenting advice that simply did not apply to her situation. Well meaning people would say things such as, “That’s just normal teenage stuff” or “You just have to use tough love.” These statements, meant to help her feel less alone, actually did just the opposite. She often told me she felt isolated from others, and that she was “crazy.” She seemed to feel better in our sessions when I found a way to validate her experience that, yes—her situation was different and unique. Somehow, paradoxically, that is what helped her feel less alone.

Looking back on it now, I wonder if I could have done more if I had helped her realize that somewhere (although not necessarily in her peer group), there are other mothers with similar challenges, going through similar painful circumstances. Would that have helped her feel less alone? It’s so easy to second-guess myself, but I  really don’t think I would have done anything differently.

Well, I’ve thoroughly confused myself further, and probably you, as well.

If I can come up with any take-away points, they’d be:

  •  Life is hard. It’s okay to acknowledge that fact.
  •  We’re all in the same boat.  We all want to be happy. We all want to suffer less and be at peace. It’s not always easy to find that place. I’m learning that meditation can help.
  • We’re not alone, even when we think we are.
  •  I need to use the word “AND” more. We are unique AND we are the same.
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