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.

Join the Club

Like many other people, I decided to enter an office lottery pool last week when the jackpot was at its record high. The person who spearheaded the group reported in an e-mail today that twenty people had entered, and we won a collective $19. In a flurry of e-mails, someone wrote, “Let’s make a ‘club’ and we’ll do this every week. Who’s in?” Once the word club was mentioned, I cringed. Ugh. I hate joining things.

I don't want to belong to any club that accepts people like me as a member. -Groucho Marx

I think it goes back to my college days when I joined a sorority, hoping to find a place where I didn’t feel like my usual misfit self. I was happy to be accepted, but soon learned it wasn’t for me. I had to wear my sorority shirt on a certain day each week. I had to go to parties at the frat houses every Wednesday or I’d be fined. I decided to quit, but this was no easy process.  I had to appear before the Board and make my case for leaving the sisterhood. I couldn’t even quit on my own.

Today, after work, I went to the local health food store. On the first Monday of the month, they offer 20% off of all supplements. The place was swamped with people, all looking for the perfect “natural” pill to take away their ailments. Or should I say “our” ailments?

I’ve written in other posts about my adventures in alternative medicine–trying to find some new ways to deal with my chronic pain. I guess I should be happy that the doctor I’m seeing is taking a holistic approach, but I feel like I’ve been thrown into this new world that seems quite foreign. I’ve never eaten that badly, but I’m a One-a-Day vitamin kind of girl, and I like my processed, easy-to-prepare foods. In addition to the various vitamins and supplements I’ve been prescribed, I’ve also been advised to follow a gluten-free, “Paleo Diet.” I’ve been experimenting with this way of eating since late January, but mostly with half-hearted attempts.  I do what I usually do: buy a few books, read them, and don’t fully do what they say. I decided that yesterday, being the first of the month and always a good time to start a new goal, I’d follow the eating plan in earnest. Well, I’ve made it almost two days. I’m hungry. I’m crabby. And I miss my carbs. But now, somehow, I’m part of some free-range chicken/organic produce/supplement-popping club.

Can I quit? Sure. Will I quit? I don’t know.

As I write this, I realize I belong to a very large club whether I want to or not. I’m part of the human club.

In her book Self-Compassion, Kristin Neff notes, “When we’re in touch with our common humanity, we remember that feelings of inadequacy and disappointment are shared by all. This is what distinguishes self-compassion from self-pity. Whereas self-pity says, ‘poor me,’ self-compassion remembers that everyone suffers, and it offers comfort because everyone is human.”

Even though my pain may be different than your pain, we have much in common.  As humans, we have imperfect bodies. Bodies that have aches and pains. Bodies that get old. Bodies that are impermanent (that’s Zen-speak for die).

Now there’s a cheery thought…

Acupuncture Barbie

photo by Deborah Leigh via Flickr

As I wrote about in a previous post, Befriending the Body, I’ve experienced pain on a daily basis for many years now. I’ve tried all the conventional approaches: physical therapy, steroid injections, and two back surgeries. For the most part, I’ve made peace with the pain and just assumed it would be something I would deal with forever. Yet there was always a nagging voice inside me that said I owed it to myself to explore more options.

I’d read some research on acupuncture, and there seems to be some scientific basis to support its use in chronic pain. Although I live in a fairly small town, I’d heard about a physician here who had trained with Dr. Andrew Weil, a well-known alternative medicine “guru” and best-selling author of many books on wellness. One of my friends had been to Dr. Christopher Link, and had taken her daughter to see him, too.  She gave Dr. Link rave reviews, and I decided it was worth a try. What did I have to lose?

Once I decided to go ahead, I waited four months to get a “new patient appointment.” I figured he must be good as it took so long to get in.  I’ve now seen him three times, and there are many aspects to my treatment plan that I’ll write about in other posts. I had my first acupuncture treatment last week, so that’s the subject for the day.

First of all, I had a mini-breakdown the few days leading up to the treatment. I worried about the financial aspect. This is all going to be an out-of-pocket expense. Am I going to be wasting my money? Mostly I worried it would be just plain weird. I had done some more research and found some people had emotional reactions to acupuncture. I talked to my friend about it and she did say that acupuncture can “release a lot of energy.” That didn’t sound like a good thing. When I hear stuff about “energy work” I get turned off. I also didn’t like thinking about the very real possibility that I’d cry somewhere along the line. Ugh.

I had worked myself up into such a state, I called to cancel the appointment, but the receptionist talked me out of it.

The night before my appointment, I meditated. An image came to mind of a picture I have hanging in my office. It has a quote on it that says: “Sometimes your only form of transportation is a leap of faith.” I don’t readily trust doctors, but I took this as a sign that I should give Dr. Link the benefit of the doubt.

At my appointment, he first came in and asked how I was doing. I offered a brief “okay” before I launched into a list of questions. I think I was mostly trying to prolong things. I thought maybe we’d run out of time. I even suggested that he was probably running late and we could do the acupuncture at my next appointment! Silly me 🙂 Finally, I asked, “Do I have to believe this will work for it to work?” He said definitely not, and then he told me about research studies with animals that proved expectations had nothing to do with acupuncture’s effects.  He shared with me that he had been skeptical about acupuncture at first, too, and he added that he didn’t know for sure whether acupuncture would help me.  I appreciated his honesty.

The actual treatment wasn’t too bad. As always, my anxiety ahead of time is much worse that the actual event. I didn’t want to look at the needles, but I’m pretty sure he put at least two in my ear and I’d say about ten in my arm and hand. Then a TENS unit was hooked up to the needles, and a heat unit was directed to my arm. I felt like I was a ham being baked.

Next a nurse put a call button in my hand. I asked, “What is this for?” She said, “To call if you need anything.” What? I was going to be left? I was doing okay until this point. I guess I had missed the part that the needles are left in you for a period of time. I was going to be in a room all by myself with needles buzzing away in my arm. The nurse asked if  I wanted some music, and I said no (music would be more likely to make me cry). I did ask for a blanket for my feet, which were freezing cold. I was proud of myself for being assertive and asking for the blanket.

During the treatment, I tried to do some breathing meditation. I imagined Sharon Salzberg’s voice from my meditation CDs telling me to simply notice the breath. I didn’t have to change anything–no need to try to breathe slowly or deeply. Just follow the breath in its natural state.  At times my attention was drawn to various points in my arm where the needles were. There was one place close to my armpit that was a little uncomfortable. Otherwise, there was no discomfort–mostly just  strange vibration sensations. I heard a timer go off and the nurse came back in. I imagined I was cooked to perfection. She said I looked flushed. She said Dr. Link had told her that was a good indicator that your nervous system was actually being reached. I didn’t say the room was just hot and stuffy, but that’s what I was thinking. She told me I could get off the table, but I felt a little bit paralyzed or something. She must have noticed an odd look on my face, and she said to take my time, that some people feel a little dizzy afterward. When I was telling Greg about it, he said, You were probably really relaxed.” I informed him that I was definitely not relaxed! (This was serious, scary stuff.)

I made it to the front window, paid for the treatment, and got instructions to drink a lot of water, and take it easy.

I went home and looked at myself in the mirror. Could I see any marks where the needles had been? Did I still look flushed? No, and no.

It was hard not to evaluate whether anything had happened. As pessimistic as I usually am, I actually thought I felt “more space” in my shoulder area. This experience of “more space” extended down my arm into my hand, and lasted all that day and the next day, too. I even forgot to take my Extra Strength Tylenol, which I take religiously.

Now if I could have only ended this blog post here.

A few days after that, the pain was back. I thought to myself, “Well, yeah, the first day I stayed off the computer–one thing I know aggravates my pain. Of course I felt better.” Even the second day, I was still trying to do less on the computer. “Maybe I just need to stop typing so much, then I wouldn’t need this stupid acupuncture!”

I didn’t expect one treatment to magically cure me. I’m going to keep going, at least for a little while. Dr. Link said we’d be able to evaluate after about 4 treatments what kind of response I was having. And I don’t know if it’s related, but I have slept really soundly since the acupuncture treatment.

As I’ve thought about this whole acupuncture thing, it dawned on me that it’s really not relevant whether it “works” or not. The point of this self-compassion project is to learn to be gentle with myself, regardless of the circumstance. Sure, it would be great to not be in pain all the time. But it’s not mandatory for happiness. Just two and a half months into this “project” and I already feel better equipped to deal with whatever life brings. Pain or no pain. It’s all good.