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Posted on 16. June 2011

10 Tips from 10 Years Sick

What I’ve learned from 10 years of chronic illness.

By Toni Bernard

On May 22nd, 2001-10 years ago to the day of this post-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. At the end of the post, I hope you’ll share your own experience.

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.

© 2011 Toni Bernhard: www.psychologytoday.com/blog/turning-straw-gold/201105/10-tips-10-years-sick

Reprinted with permission.

Toni Bernhard is the author of the How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, winner of the 2011 Nautilus Gold Book Award in Self-Help/Psychology. Toni can be found online at www.howtobesick.com.

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Comments (7) -

Antoinette Lechtenberg
8:33 PM on Thursday, June 16, 2011

Thankyou for sharign your life transition.  I have just reached my 10th year of chronic illness.  Your words hold so  much wisdom and grace - again thank you!

JanetK
9:38 AM on Friday, June 17, 2011

I'm 18 yrs in to this phase of my life.  Toni's words ring very true.  Thank goodness learning is my passion.  Let there be light!

Ann Hendon
11:37 AM on Wednesday, June 22, 2011

This is the first time I have ever commented to something on the inter-net, but I have been struggling with finding a diagnosis and have started taking IVIG treatments and I really need to talk to somebody who understands and is willing to share. Thank you for your forthrightness and honesty. Thank you for your tips.  I am anxious to read your book. God bless. Ann

Toni Bernhard
5:30 PM on Wednesday, June 22, 2011

Antoinette (My full name is Antonia!). We've both reached 10 years sick. Not an easy milestone but I'm glad my article was helpful to you. Warmest wishes, Toni

Janet - Yes, let there be light! I'm so glad that you found my article to be helpful. At 18 years in, you know so much about the challenges we face. Warmest wishes, Toni

Ann - I'm honored to have written the article that brought your first internet comment! I know that feeling of wanting to connect with someone who understands how we feel. I think you'll find that in my book, based on what others have told me. If you do get it, I hope with all my heart that you find it helpful. Warmest wishes, Toni

Rachel Rich
1:00 PM on Friday, July 01, 2011

A gem of an article.

Toni Bernhard
5:13 PM on Friday, July 01, 2011

Hi Rachel,

Thank you so much! Warmest wishes, Toni

Linda Thornrose
3:50 PM on Saturday, January 26, 2013

I am 9+ years diagnosed with CVID...had to retire 6 yrs ago due to health problems (not only CVID as I am sure many others deal with), have had my elderly mother who suffers from dementia to live with me and care for, for which I feel blessed, and have learned a tolerable routine.  Your experiences and ideas are a blessing in addition to those I have learned.  We endure the bad days and welcome the better days, right??  Smile  The saddest thing I deal with is seeing my mother's mind fail, but that too is life.  My husband just retired so tries to pitch in to help more, so that, too is a blessing.  I don't think he truly understands my illness, but he has learned to live with it and at times is very protective for which I am most grateful.  Over all, life is life and when you look around, there are always others who are much worse, so why complain?  It only brings you and those around you down.  God bless you Toni and I am going to look for your book...I love to read, crochet and play board games with Mom, so the book fits right in.  Linda T.

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