A year ago, I posted a piece titled, “10 Tips from 10 Years Sick.” Well, a year has gone by and I’m still sick. So, I’ve re-visited that post, changing some of the tips and adding to others. And, of course, there are now 11 tips, not 10! At the end of the post, I hope you’ll share your own experiences.
1. The onset of chronic illness or pain is the beginning of a grieving process.
I could have weathered the first three stages of the grieving process—denial, anger, sadness—with a lot more grace had I known that grief is a natural response to a sudden, unexpected change in health. But I didn’t know. The onset of chronic pain or illness is a major life event. Looking back on what happened to me, now it seems obvious that losing my ability to freely function would trigger denial, anger, and sadness. But it took me many years to understand this and, until I did, I wasn’t able to come close to touching that fourth stage of grief: acceptance.
2. This is just your life.
The writings of Zen teacher, Joko Beck, have helped me to accept the life I have. In one of my favorite quotes, she said: “Our life is always all right. There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.” I find great solace in these words. Not everything can be fixed—perhaps not even my health.
“Just my life” has meant ending my career years before I expected to, being mostly housebound, feeling continually sick, not being able to socialize for very long. These are the facts that make up my life. I accept them and vow to make the best of the life I’ve been given. Part of making the best of this life has been creating a new life, mostly from the bed.
3. When creating a new life, think outside the box.
Your new life may be found in photography, embroidery, writing, or helping others from your phone or computer. If your favorite activities are no longer within the realm of possibility for you, think outside the box. The first few years after getting sick, if someone had told me I’d write a book from the bed, I would have said, “Not possible.” But I did, and now I’m writing a second one. I hope you’ll open your hearts and minds to possibilities that are within your reach.
4. Don’t spend your precious energy worrying about what others think about your medical condition.
When I first got sick, I was extremely sensitive to what I perceived to be other people’s opinions of my illness. Do they understand just how sick I am? Do they think I’m a malingerer? If someone sees me at a café, will they assume I’ve recovered?
These stressful stories I kept telling myself served only to add mental suffering to the physical suffering I was already enduring. It took me several years to realize that I had to take care of myself instead of taking care of what other people thought of me! I no longer concern myself with how others view my illness. I know I’m sick, and that’s good enough for me.
5. There’s no way around it: friendships are affected by chronic pain and illness.
Some of my friends didn’t stick around. Others did, but our relationship has changed. Before I got sick, I loved to share the details of my life. But now those details are not so appealing: a catalogue of symptoms or a list of side-effects from a medication; the details of a doctor’s appointment. It took me several years to learn how to be a friend while sick. Now I focus on subjects other than my medical condition and, to my surprise, it has turned out to be a treasured respite from my illness.
I used to be bitter about friends who didn’t stick around, but I’ve come to realize that friendships, like everything else in life, are ever-changing. People may have dropped out of my life for any number of reasons—the stresses and strains in their own lives, their discomfort about illness (perhaps it reminds them of their own mortality). I know they wish the best for me, and I wish the best for them.
6. You can be working even though you’re not working.
I’m in bed a good part of the day and so I tend to think of myself as not working. But, I’m working! Writing this piece is working. Answering emails from people who’ve read my book is working. Working on my new book is, well, working! Maybe you draw or knit or embroider (not to mention take care of little ones): that’s work. In fact, it can be work just to keep people updated on the condition of our health!
My point is that, in the same way that we’ve come to think of stay-at-home moms or dads as working people, those who’ve had to leave the outside-the-house workforce due to chronic pain or illness are often 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.
7. Don’t be afraid of the blues.
People in excellent health get the blues, so of course we do too. Our blues can be particularly intense, because they often center around the frustration and hopelessness we feel about our medical condition. One of the triggers for my blues is a day when I wake up feeling just plain weary of being sick. I’ve told the story before of how, one day, shortly after my book was released, I saw my primary care physician. As usual, he asked how I was. With a sigh, I said, “I’m tired of being sick.” I half expected him to say, “What? The author of How to Be Sick is tired of being sick?” But, he didn’t. He understood.
The good thing about the blues is that, like the weather, they 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 dog or making my favorite hot drink or watching a movie on TV.
8. Thank goodness for the Internet.
I know that many of us have to pace ourselves because time on the computer quickly uses up our energy stores, but this illness would be so much more difficult to live with if I didn’t have access to the Internet. Think about how isolated people used to be when they were housebound. They may have had a telephone, but no email, no access to health information, no ability to connect with others who are similarly sick. Through blogs and Facebook and other social media, we can “gather” with people from all over the world.
I’ve heard from many people who live alone and are housebound. They tell me that cyberspace friends are their only source of support. I’m fortunate to have a loving husband at home, and yet I still find it incredibly comforting to connect online with another chronically ill person and be able to say, “That’s exactly how I feel!” (and I’m talking about emotional feelings as well as physical ones!).
9. Find beauty in the commonplace.
Everyday life is not mediocre if we look at it carefully. In a passage I love from Emma, Jane Austen said this about Emma as she looked out her window at the small happenings in the village street below: “A mind lively and at ease, can do with seeing nothing, and can see nothing that does not answer.”
I used to think nothing much occurred in and around my house. Now, it feels as if the whole world is on display outside my windows. The four seasons have become so distinct—summer birds verses winter birds; baby squirrels growing into adult squirrels; green leaves turning to orange leaves. And, I love all the small happenings in my bedroom: a spider, dropping from the ceiling on a silken thread, only to stop a foot above the bed; a fly, dashing around the bedroom like some crazy freeway driver.
10. Make a conscious effort to find the positives in your new life.
One day, my mind was churning with a list of grievances about living with chronic illness. Inspired by Byron Katie (in a practice I explain in the book), I decided to turn those thoughts around. I picked up a pen and told myself to list everything I liked about being sick. I started this little exercise with a cynical smirk on my face. But when I put the pen down, I was astonished at what I’d come up with. Here are four of the twelve items on my list: I don’t answer to an alarm clock; I’m never stuck in traffic; I have the perfect excuse to avoid events I don’t want to attend; my “To Do” list is very short.
I hope you’ll try this little exercise. I think you’ll be surprised at the results.
11. Listen to your body.
If it's telling you to stop visiting, find a way to stop visiting. If it's telling you that a slow walk around the neighborhood would feel good, take that walk. Before I got sick, I hardly ever listened to my body. Now it has my ear all the time.
© 2012 Toni Bernhard www.tonibernhard.com
You might also like "The Challenges of Living with Invisible Pain or Illness."
Thank you for reading my work. My upcoming book (Fall 2015) is titled How to Live Well with Chronic Pain and Illness: A Mindful Guide.
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.