10 tips from 10 years sick

Ten years ago this summer, my husband and I flew from California to Paris, planning to immerse ourselves in Parisian culture for three weeks. The second day there, I got sick with what appeared to be an acute viral infection. I spent most of those three weeks in a Parisian bed. Ten years later—I’m still sick. I didn’t research what I should have learned the past 10 years. These are just 10 things I have learned.

1. Take time to grieve your old life and then create a new one.

I was in such denial that I forced myself to return to work while sick. When my body finally broke down and I had to trade the classroom for the bedroom, I was angry for months. Then I was paralyzed with sadness over the loss of my identity: With my children grown and gone, who was I if I wasn’t a law professor?

Denial, anger, sadness/depression, acceptance—these are well-known as stages in the grieving process. I could have weathered denial, anger, and sadness with a lot more grace had I known they applied to a life-disrupting illness.

It took me many years to reach a level of acceptance that made it possible to create a new life. Your new life may be found in photography, embroidery, writing, public service (my friend in Australia, Marilyn, does relief work from her computer, re-uniting animals with their owners after natural disasters).

If your favorite activities are 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. Open your heart and mind to possibilities that are within your reach.

2. Friendships are affected by illness, often dramatically.

Some friends have disappeared from my life. Others have stayed around, but our relationship has been altered by my illness. 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.

As for friends who haven’t stuck around, our friendship may have faltered for any number of reasons—their discomfort about illness, my unreliability as a companion. I know they wish the best for me, and I wish the best for them.

3. Illness is the great equalizer.

Nowhere is this more evident than in the waiting room at a medical facility. My health care provider serves the indigent in several counties. I share the waiting room with the homeless and the affluent. People graciously give up their chairs to others in need. People admire each other’s children. They engage in friendly small talk. We know we’re in this together.

4. Trust your judgment regarding what you can and cannot do.

Most of us were raised to be eager to please others. As a result, we often question our own judgment about what’s best for our health. I’ve reached the point where I don’t care if someone thinks I can do more than I know I’m capable of. I trust my own judgment.

Sometimes I’m willing to push my limits and pay the consequences. But it’s my choice. Recently, my husband and I went to the wedding of a dear friend. It was a small gathering at her house. After the ceremony, it was hard to skip the restaurant celebration, especially with people asking us to come. But I knew I’d reached my limit—in this case, the limit of how far I could go outside my limits!

5. Find beauty in small things.

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’ve learned to do with seeing beauty in 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.

When I wrote about this in “Issa: My Life Through the Pen of a Haiku Master,” a reader commented, saying she’s had to trade a life of activity for one of stillness, but when she uses that stillness to observe her small world closely, “…it almost seems like an even trade.”

6. Cultivate gratitude.

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.

Now when I go to bed at night, I reflect on what I’m grateful for in my life. The list is long.

7. Some days you’ll just plain feel weary of being sick.

When I saw my GP a few weeks ago for my usual three-month follow-up (10 years of “follow-ups”!), 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.

I still have days when I’d trade all the wonderful things that have happened because of my book just to have my health back. But I also know that if I’m patient, the weariness will pass, and I’ll once again get on with my new life.

8. A loving caregiver is to be treasured.

My heart goes out to those of you who don’t have someone to care for you. This illness has been as hard on my husband as it’s been on me—he’s lost his partner out in the world and has to run our household almost on his own. I know that a lot of partners don’t hang around. Not a day goes by that I don’t appreciate how fortunate I am and wish that all of you had the same loving support that I do.

9. We’re fortunate to live in the Internet Age.

I can’t imagine how much more difficult this illness would be if I couldn’t connect with others on the web who are similarly sick. Through blogs and Facebook and my website, I’ve met people from all over the world.

If you live alone and are housebound, cyberspace friends may be your only source of support. It’s so comforting to hear from another person with chronic illness and be able to say, “That’s exactly how I feel!” When I think of how isolated people were who were sick just a few decades ago, I feel fortunate to be sick in the Internet Age.

10. This is just my life.

Zen teacher, Joko Beck, 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. My heartfelt wish is that you do too.

Toni Bernhard was a law professor at the University of California—Davis. She is the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their CaregiversHer forthcoming book is titled How to Wake Up: A Buddhist-Inspired Guide to Navigating Joy and Sorrow. She can be found online at her self-titled site, Toni Bernhard.

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  • Anonymous

    I appreciate that Ms. Bernhard acknowledges that she is fortunate to have a caregiver.  I assume she also has some degree of financial security.  Her approach is lovely if the patient has her level of the illness, no additional complications and the other circumstances she has in her life.  Even the sickest of patients can find some of her suggestions to be useful.  However, doctors must not take her writings and try to impose these ideas on all of their ME patients.  Often the doctor is the only person in the patient’s life who (hopefully) understands the struggle that specific patient is carrying. The majority of ME patients were people with full, happy lives, so early on in the disability often the doctor should serve to gently hold the patient back when they are wanting to over-extend to get back to what they love.  Note the author said she worked too long – until her body broke.  This is not uncommon.  This disease can also cause changes in the brain make which make it impossible for former lawyers to make phone calls for a charity or for former professors to write even an e-mail or for former academic librarian/researchers to be able to retain enough to read a book.  It’s important that medical professionals understand the range within ME is as great as the range in any other complex illness.  The patient will then receive better treatment, and, given the opportunity, the healthcare provider can briefly distinguish for a friend or family member that patient from someone like Ms. Bernhard or Lauren Hillenbrand who are public faces of ME.     

    • Anonymous

      nowizard:  “… doctors must not take her writings and try to impose these ideas on all of their ME patients…”

      Doctors must not take ANY patient’s personal observations and “try to impose” them on ANY OTHER patient, and I’m sure that’s not what Toni is implying in the first place.

      I was struck by how applicable all 10 lessons learned here are to those of us living with serious heart disease.  And just as in any other chronic and progressive illness, there is a wide range of patient experience and recovery, from being able to bounce back to work, play and all former activities following a cardiac event to suddenly facing a severely limited “new normal” marked by ongoing cardiac symptoms, depression and disability – and everything in between!

      And it doesn’t matter whether you’re a former law prof, a young student or a retired factory worker, the change between where you were and where you are now is the critical piece in learning to live with any life-limiting diagnosis. I was a relative newbie at this ‘being sick’ business when I wrote “The New Country Called Heart Disease” last year – http://myheartsisters.org/2010/10/09/new-country/   I’m adding a link to Toni’s piece from that essay today! Many thanks for sharing your “10 tips” here.

      • http://www.howtobesick.com Toni Bernhard

        Thanks for your comment, Carolyn, and for adding a link to my piece at your site. I agree with everything you say. Every patient must be treated individually by a health care provider and, as I said, chronic illness is the great equalizer for all of us. Warmest wishes, Toni

  • http://www.howtobesick.com Toni Bernhard

    Thank you for your comment. I am indeed fortunate to have a caregiver and, as I mention in the article, wish everyone were as fortunate as I am. There is such a range of symptoms and functionality among people with ME that I believe, as do many experts, that it is not one illness but several discrete ones and that until research money is allocated to it and those subsets are identified, little progress will be made in finding a cure or even effective treatments.

    I describe these differences in the chapter in my book that focuses on my illness (the book is not just for people with ME), noting my particular constellation of symptoms and how it’s hard to find two people with the exact same set of symptoms. I feel as if I have the flu 24/7 — the flu without the fever. But I’m not in terrible pain nor is my cognitive function impaired as much as it is for many people. I’m overly sensitive to light and to other sensory inputs and my concentration is affected by the feeling of constant flu, but I don’t, for example, forget where I put things (except to the extent that everyone does sometimes). I read about other people with the diagnosis of ME and often think: “We don’t have the same illness.”

    I hope the powers that be will begin to take this constellation of symptoms seriously by putting money into research figuring out why so many people are disabled by what goes under the umbrella term of ME or CFS.

  • Anonymous

    7. Some days you’ll just plain feel weary of being sick.
    One of the best things a healthcare provider (or anyone else, for that matter) can do is simply validate the feelings of the patient. An acknowledgement that, “Wow, that must be really awful for you,” can go a long ways towards developing and establishing a compassionate and healing relationship.

    • http://www.howtobesick.com Toni Bernhard

      It would be wonderful is a healthcare provider would validate how we feel. My doctor did in his own way by not contradicting what I said (as I note in the piece) but I don’t think any healthcare provider has ever acknowledged the difficulties I face with this illness by giving me that “active listening”-type feedback: “Wow, that must be really awful for you.” I’m holding out hope that it will happen someday and I hope it’s happened to you! Warmly, Toni

  • Anonymous

    Thanks for your kind response.  I must clarify that I have great respect for both you and Ms. Hillenbrand and did not intend to discount the terrible impact of this illness on either of your lives.  I admire and appreciate your writing and hers.  I know that your book is helpful to both patients and caregivers as I have read it and discussed it with others who have. 

    My assumption here was that there may be doctors and others in healthcare who may read this article and nothing else on ME.  I wanted to make those readers aware that ME suffers who are unable to do much of anything are probably feeling terrible guilt and frustration.  My hope is that each patient will be accepted on the face of what they tell the doctor and be treated with support rather than skepticism. 

    I realize that in my desire to make a point I was less than supportive of you and I apologize for that.  One needs only imagine becoming suddenly unable to do their job regardless of their level of desire to continue, and to think of their physical world shrinking to about the size of their house, to see just one part of the experience in which you have managed to find a way to help others.

    • http://www.howtobesick.com Toni Bernhard

      Nowizard:  thought my response to you acknowledged the good points you made and I didn’t feel unsupported by you or that any apology on your part was needed. Doctors need to be better educated about the range of functionality with ME patients and not assume everyone can even be on the computer like this typing away. I saw that, even though I’ve been told that I am on the “severe” side of CFS as far as functionality goes. For example, there’s no such thing as “pre-emptive rest” for me, resting even when you don’t feel sick so that you expand your functionality envelop. Well, I always feel sick. I just get on the computer anyway! My best, Toni