Turning Straw Into Gold

Life through a Buddhist lens

13 Tips From 13 Years Sick

Making the best of 13 years of chronic illness

When I began to write for Psychology Today over three years ago, one of the first articles I posted was called “10 Tips from 10 Years Sick.” It’s three years later and…I’m still sick. And so, 10 + 3 = 13, meaning it’s time for “13 Tips from 13 Years Sick.” Some have made an appearance in different form in the earlier pieces, but that’s because some tips have a very long shelf life.

1. Count your friends by quality not quantity.

It’s better to have two friends who understand you and believe you and support you than to have ten friends who question whether you’re as sick or in pain as you say you are.

2. Don’t be bitter about the people in your life who don’t respond as you’d like.

I used to be bitter when people didn’t respond the way I wanted them to, but it didn’t make me any less sick and it didn’t change make a difference in their behavior. The day I gave up being upset that not everyone in my life was going to understand what I was going through was the day I began to feel a measure of peace of mind about this unexpected turn my life has taken.

Putting aside bitterness feels so good. For me, it’s an equanimity practice—equanimity being that calm and balanced state of mind that’s able to ride life’s disappointments with acceptance and with grace. To practice, I remind myself that not everyone will behave as I want them to and (most important for equanimity) that this is okay with me. Some people will come through for me and some won’t. Do I really need everyone to understand what it’s like for me to be sick? No! I understand, and that’s what matters most.

3. Try to do something each day that makes you happy.

See if you can make this a habit. It may take practice since many of us tend to look after ourselves last. If that describes you, it may help to make a list in the evening of your plans for the next day, making sure the list includes an activity or two that brings you fulfillment or joy so it’s part of your agenda for the day ahead. And on days you don’t get to those activities (maybe you were in too much pain or maybe unexpected obligations arose), forgive yourself…and start again by making a new list that very evening.

4. You can be working even though you’re not in the official “work force.”

People who are bedbound or housebound tend to think of themselves as not working. I’m in or on the bed a good part of the day. But...I’m working. Writing this piece is work. Answering emails from people who’ve read my books is work. Writing my new book is work. Maybe you draw or knit or embroider (not to mention taking care of other family members): that’s work. And, of course, it’s work just to stay on top of our medical conditions—keeping abreast of the latest developments, assessing doctors, evaluating the effectiveness of treatments, keeping family and friends informed about how we’re doing. Whew!

My point is that, in the same way we’ve come to think of stay-at-home moms or dads as working people, those of us who’ve had to leave the outside-the-house workforce due to chronic pain or illness—or, as is often the case, both—are still working, even if it isn’t paid work. So, when people say to us about our lives, “I wish I could lie around all day and do nothing,” we know they just don’t get it.

5. Don’t get hooked into believing you always have to “think positively.”

This is known as the “tyranny of positive thinking.” Are we never supposed to get blue or frustrated or disappointed over our health problems? That would be holding ourselves to an impossible standard. Although the mind and the body are interconnected, I do not believe that “thinking positively” or visualizing that we’re 100% healthy can cure disease, even though I’ve received dozens of private emails telling me otherwise.

As for those “I’m-not-feeling-positive” moods, people in excellent health get blue and frustrated and disappointed, so of course we do too. Our “not-feeling-positive” moods can be particularly intense though, because they often center around the frustration and hopelessness we feel about our medical condition. One of my triggers for a down and out mood is a day when I wake up feeling just plain weary of being sick.

At least moods, like the weather, blow in and blow out. They arise in the mind, stay awhile, and then pass. I’ve learned not to try and force them away because that almost always intensifies them. Instead, I like to disarm their sting by greeting them with friendliness, even though they’re uninvited guests. I’ll say something like, “I know you, blues. Come to visit again, have you?” Then I just wait them out, like I wait out a rainstorm—perhaps by cuddling with my dogs or making my favorite hot drink or watching a movie on TV (or all three at once!).

6. Don’t be swayed by others people’s advice if your heart, mind, and body are telling you not to follow it.

People have lots of advice for me regarding my health—from the reasonable to the absurd. Like most of us, I was raised to please others and so I used to feel an obligation to follow their advice just to please them. In retrospect, that’s quite amazing: I’d follow someone else’s advice just to please them even if my mind and body were telling me it wasn’t a good idea. Finally, I've reached the point where I don't care if someone thinks I I’m foolish not to follow his or her advice. After thirteen years, I trust my own judgment.

7. Expect grieving to come and go…and come and go

Throughout life, we experience losses that lead us to grieve, and the loss of good health is one of them. The onset of chronic pain or illness is a major life event, so it’s not surprising that it triggers the need to grieve. But as the years have gone by, I’ve changed my thinking about grief and illness.

I used to think it would be a “one-time-through-the-stages” of grief process (the stages usually broken down into denial, anger, sadness or even depression, and then…acceptance). I thought that once I passed through a stage, it wouldn’t return. But now I see that acceptance can give way at any moment to a new round of grieving, maybe with just one of those “stages” popping in for a visit, such as anger or sadness. When this happens, I’ve learned not to push the grief away in aversion because that just strengthens it. Instead, I allow it to be present, treating myself as tenderly as I can until it passes.

8. Unless your symptoms prevent it, use the internet to connect with the world.

The internet is a rich and multi-dimensional resource. Imagine how isolated people were just a few decades ago if they became housebound. The internet allows us to connect with others—to forge friendships with people from all over the world.

The internet also helps us become our own experts on our chronic condition. And it offers educational possibilities, many without costing a penny—from Ted Talks, to Coursera (www.coursera.org) and Open Culture (www.openculture.com) where you can take university-level courses for free, to The Khan Academy (www.khanacademy.org) where you can take lessons on almost any subject for free.

And the internet allows us to continue to contribute to the well-being of others and the planet. My Facebook friend, Deborah, recently told me about the work she does online with cat rescue. And, in the days after the earthquake in New Zealand several years ago, my dear late friend Marilyn worked tirelessly at her computer to re-unite people with their pets, even though she was hundreds of miles away in Australia and was very sick at the time.

9. “Don’t let yesterday use up too much of today.” —Will Rogers

Every once in a while, I wake up and find myself ruminating about my “perfect” pre-illness life. There’s nothing wrong with enjoying fond memories of the past, but that's different from putting that past on a pedestal and convincing ourselves that life was perfect for us then—or even near perfect. When I find myself doing this, I think about this proverb and then try to get on with the day that’s unfolding before me. Or, I take a refresher course by re-reading my own article that cautions us to beware of “Good Old Days Syndrome.”

10. It’s okay to be a walking contradiction!

Contradictory feelings are normal. On a retreat many years ago, Buddhist teacher Jack Kornfield referred to life as “happy-sad.” Those words resonated strongly with me. I can be happy and sad at the same time—for example, sad that I’m sick, but happy that I’m able to connect with others online who understand what this life is like.

And I can be terribly disappointed but, at the same time, okay with my life. A few months ago I had to skip the 30th reunion of my law school class because I was too sick to attend. I wanted to go badly and so was very sad about it but, oddly, at the same time I was okay with it. Yes, being sick is unpleasant, but I have a decent place to live, a caring partner, and two faithful dogs to keep me company when there’s no human around; so, life is okay.

When I make room in my heart for seemingly contradictory feelings, I feel more accepting of my life as it is.

11. Prepare yourself for the possibility that you’ll be chronically ill for the rest of your life.

This may not be the right course for everyone, but I’ve included it because of an experience I had a few months ago. One day, I had a “moment of truth” when I realized that I might be chronically ill for the rest of my life. I’ve tried dozens of treatments; none of them has cleared up the flu-like symptoms that I live with day in and day out. In that moment when I thought, “I might feel like this the rest of my life,” surprisingly, instead of feeling sad and depressed, I felt liberated, as if a great burden had lifted: the burden to get better.

Without that burden, I felt free to get on with the life I have instead of always fighting the exhausting battle for what, in the end, I may not be able to get—my health restored. Don’t get me wrong. I’m still actively looking for new treatments, but I’m also newly open to the possibility that there just might not be a treatment out there that’s going to work for me. This openness has helped me find a measure of peace and well-being with life as a person with chronic illness.

12. Look for ways to help others.

It's not unusual for us to turn our focus inward to our sick and pain-filled bodies. This is understandable and, at times, very skillful because we want to do everything we can to find the most beneficial treatments and maximize our functionality. But turning our attention away from our health concerns and reaching out to others can relieve some of the mental anguish that accompanies focusing exclusively on our ailing bodies.

Helping others can take the simplest form: a short email to someone or a supportive comment on Facebook. It doesn’t take much to brighten another person’s day.

13. When all else fails, go to bed.

This tip Is not original to me. I learned it about ten years ago from Bruce Campbell at his terrific website called CFIDS and Fibromyalgia Self-Help.

For me, it was a great tip then, and it’s a great tip now.

***

Those are my 13 Tips. I wonder what this upcoming year has in store for me...

© 2014 Toni Bernhard www.tonibernhard.com

Thank you for reading my work. My most recent book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow.

I'm also the author of the award-winning How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers

Using the envelope icon, you can email this piece to others. To receive an email the next time I post, click here. I'm active on FacebookPinterest, and (to a lesser extent) Twitter.

Toni Bernhard, J.D., is a former law professor at University of California at Davis. She wrote the award-winning How to Be Sick and, recently, How to Wake Up.

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