11 tips I’ve learned from 11 years sick

A year ago, KevinMD.com was kind enough to post my piece, 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 several of the tips and adding to others. And, of course, there are now 11 tips, not 10! At the end of the piece, 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 think 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. 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.

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. Thank goodness for the Internet.

I know that 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!).

11. It’s okay to be a “walking contradiction.”

In this context, a better choice of words might have been “sitting contradiction” or “lying down contradiction,” but I’ll stick with the idiom “walking contradiction” which refers to having characteristics which seem to contradict or go against each other.

I’ve discovered that it’s okay to feel emotions that appear to contradict each other. I can be sad and happy at the same time—sad that I’m sick, but happy that I’m able to connect with others online who understand what this life is like. On a retreat, Buddhist teacher, Jack Kornfield, once referred to life as “happy-sad.” I like that expression.

I can also be terribly disappointed but content with my life at the same time. My current disappointment is that it looks like I’ll have to skip the 30th reunion for my law school class. I really want to go and so I’m terribly disappointed about it but, oddly, at the same time I’m content with the life I have—a decent place to live, a caring family, a friendly dog.

When I make room in my heart for seemingly contradictory feelings, I feel more at peace with my life. My heartfelt wish is that you’ll learn to do this 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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  • http://twitter.com/WysWoods Wy Woods Harris

    I read this post because I am in transition after a devastating diagnosis 10 years ago and one of my passions is to help someone else navigate their journey to wellness so I thank you for reminding me that my faith wheels really helped me to move on down the road!

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

      I’m so glad my piece was helpful to you. Thanks for your comment. Warmest wishes, Toni

      • http://www.facebook.com/jan.masleid Jan Masleid

        Always so glad to hear from you, Toni, and to feel your presence among all walks of people’s situations. And isn’t it always comforting to know that Dr. Kevin’s blog efforts continue? He’s such a terriffic guy and IMO performs a worthwhile service with this communication platform in regards to modern medical practices and events.
        Bless you both!

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

          Jan – I’m so glad you liked the post. Yes, Dr. Kevin is very supportive of the chronically ill. It’s such a wonderful way to be able to reach health professionals and people who are struggling. Warmly, Toni

  • carolynthomas

    Lovely work here, Toni! I especially liked #8: “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.” A useful exercise – I’m going to try it, and then recommend it!

    What’s the new book about, and when do you think it will it be out?
    Take care,
    C.

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

      Thanks so much, Carolyn. I’m glad that you liked number eight! The new book will be out in 12-15 months. I just turned in the manuscript and so still need to go through all the editing and publishing process with my publisher. It will be broader in scope than “How to Be Sick” — working with all of life’s challenges and difficulties — but will still have a lot about health problems in it since I write from my own experience! I’m SO glad to have finished the manuscript. Warmly, Toni

  • http://www.facebook.com/suzie.towns Suzie Towns

    I could have written these sentiments! It gave me a voice. I am just at that stage, 3 years after a heart attack, that I am trying to balance world of medicine and my day to day life. Acceptance does not come easy…I keep thinking if I just did something differently I would get out of this hole….if I just work harder, do better….THAT is tiring.

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

      Hi Suzie. I’m so glad that you found my article to be interesting. You might consider my book, “How to Be Sick.” I don’t mention it often because I’m not writing these articles in order to sell books, but the particular difficulties you mention — acceptance not coming easy, etc. are just what my book addresses. You could check out what people say about it at Amazon and see if it looks like it would be helpful. Meantime, take good care of yourself and thanks for your comment. Warmly, Toni

  • http://twitter.com/dfntvmaura Maureen Rudden

    Oh Toni, I just read your article and selfishly so, I felt you wrote it for me. What insight you have given to those of us that have major chronic conditions, what a life, morale and sanity saver you are. I am a BC survivor with remission since 06 but have severe back, neck and leg issues. Since recovering from a coma (05) my mind has thought over and over about the viability of loyalty and friendships. It is so hard when all you have ever known is destroyed by an illness and then fight to try and enjoy life. Trying to understand why those you considered best friends are gone. I have struggled to begin a new life and personally I feel I am doing OK, in a lot of pain but now I treasure each and every day, each and every smile, laugh and just the fact, yes I am alive.

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

      Hi Maureen. I’m so glad that article spoke to you. You’ve been through so much. You clearly have much courage. Losing friendships has been the most difficult adjustment for me. I devote a chapter in my book, How to Be Sick, about it and I say that it was the chapter I put off writing until last because it was so hard for me.

      I’m so glad to hear that you’re doing okay and that you’ve learned to treasure each day and just the fact of being alive. That’s what I try to do too. Warmest wishes, Toni

  • StephenModesto

    Well Toni, this is great that you have a posting on Dr. Kevin’s site. When I saw the title of the article, I immediately thought of you and sure enough, here you are adding insight and perspective for those who might not know of your `Turning Straw into Gold’ site. And yes, the vacillation between the `happy-sad’ moments can move quicker than the eye blinks. Any illness seems to be an abrupt reminder of human mortality, yet the often unaddressed anxiety is the chronicity of birthday decrepitude itself. Anxiety is definitely contagious; we see it/hear it everyday on daily news, yet calmness can also be contagious. Thank you for the reminder by your shared expereinces.

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

      Hi Stephen. Yes, it’s so nice of Dr. Kevin to post some of my pieces. I’m glad that you read Turning Straw into Gold! Warmly, Toni

  • Sarah Rybicki

    I read this article and saw a world of possibility open up in front of me personally and professionally. I texted the link to your 11 tips to a good friend of mine struggling with a debilitating chronic illness. In the past two years, we’ve been each other’s main supports through some devastating health problems. Neither of us had read your book, so I bought two copies and made plans with my friend for a retreat day at a local wellness center to discuss the book. Giving ourselves time and space to reflect on the meaning of our new lives in solitude and together feels like the right next step for us. Thank you for your work. It is deeply appreciated.

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

      Hi Sarah. I’m so glad that you liked the article and that you and your friend are going to read my book. I feel confident from the feedback I’ve had on it that you’ll find it helpful. The response has been more than I could have imagined. I hope you’ll let me know what you think. You can get my email from my website: http://www.howtobesick.com

      All my best to you,
      Toni

  • Cheynna Bard

    Thank you for this piece, Toni. At 26 years old, a year after the diagnosis of my chronic autoimmune illness, I’m coming to terms with leaving the career that I worked so hard to build and dreamed so many years of achieving. Now I am forming entirely new dreams. While I feel sadness, I also feel liberated and inspired in an odd way. Not many people have the opportunity or bravery to reinvent themselves in their 20s.

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

      Hello Cheynna. I’m so glad you liked my piece. I know what it’s like to leave a career that we worked so hard to built. I write about that trauma a lot in my book. I’m so glad to read that you feel liberation along with the sadness and wanted you to know that I have those same seemingly contradictory feelings. You have much courage and wisdom to be able to feel this way while you’re so young. All my best to you, Toni

  • life well Lived

    Number 8 is one I’ve found useful with my daughter. Even though I am not
    religious we pray every night ending with something for which we are thankful.
    It also plays into my game of Me the way to competitive guy versus the crap
    otherwise known as life game where ever thing which I see good in the day is +1
    and the bad is -1. With only the biggest event warranting a + or – 2 (like the death of our dog), I’ve never ended a day in the red, and the game is a good way to
    make me think about the sheer number of good things in my life from the guy
    holding the elevator for me to the excited pandemonium greeting me at the front
    door after work.

    As I have gone through 6 years of MS and with my wife continued
    fostering/adopting medically fragile children, I think conveying #4 to them is
    critical. I’ve never hidden my MS at work, though people I’ve worked with for
    over a decade frequently express surprise when they find out. I don’t want my
    kids to feel overly self-conscious. Wear the scars with pride. You lived
    through some incredible surgeries. Be the proud symbol of days of miracle and
    wonder. Still, this is a hard concept for a 5 or a 6 year old to get when none
    of their friends have scars or g-tubes or…Still, I would wish them to live out
    loud instead of meke and embarrassed. Granted, I wish for a little less loud at
    3am.

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

      Live well Lived – I’m so glad you liked my piece. Your comment contains so much wisdom. I learned from it and thank you for taking the time to share your experiences with me. You’re doing a wonderful job with your kids, it looks like — teaching them not to be embarrassed and to be thankful for what they do have in life. All my best to you, Toni

  • Amy Staples

    Toni, so appreciated this little diddy about living with illness. I wrote a book years ago but never had it published. Hubby thinks I need to start blogging about “stuff”, but I feel so overwhelmed that I just don’t know where to start. I have been doing dialysis for 10 years. I’ve been on the waiting list to receive a donor kidney for over 8 years. With all the surgeries (including having both my navitve kidneys removed), procedures, infections, hospitalizations hubby feels I am more than competent to give a good perspective and advice regarding dialysis in general. Your tips have really hit home with me. Perhaps I will make a committment to blog daily or as often as possible about my journey through this maze of doctors, hospitals, treatments and living as well as can be. Thank you so much for sharing your thoughts and advice, it has renewed my hope.
    P.S. The first sentence under #10 is missing a word. I think you meant to put the word “most” in there. I am quite particular in editing (i.e., catching spelling or grammar issues) lol. I’m not trying to be picky. You should see me when I read Yahoo articles!
    Blessings
    Amy

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

      Hello Amy. I’m glad that the piece resonated with you. You have so much on your plate just coping with your day-to-day health issues that I’m not surprised it’s hard for you to find time or the energy to write. If you can, you will. In my book, I talk a lot about accepting our limitations. It’s a challenge, that’s for sure.

      Re: the omitted word. I’m an editing perfectionist myself. That error occurred in posting the article here and I don’t have the ability to edit it. I looked at the piece I submitted and it had the word “many” where the omission is. Ah, well.
      Thanks again for your comment. Warmest wishes,Toni

  • http://twitter.com/drsharryn dr sharryn

    Beautiful piece! Just been to a #painsummit at uk Houses of Parliament looking at many of theses issues.
    It’s on the agenda – high on it. Hopefully things will now move forward into providing early help and continuing support

  • http://twitter.com/ZansD94 Dana

    WOW I am so glad to have read that ! Thank you. I have been ill for quite some time now, have been accused by some in the medical field as a faker, lost my home, job and life due to the chronic incapacitation brought on by my illness. I have constantly been frustrated with SO many of the issues you wrote about, sent a bit of peace into my very heart to read this. Thank you, I am going to have to buy your book !

  • http://twitter.com/ZansD94 Dana

    You just gave me a huge shot in the arm of hope !

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