In 2001, I got sick with what the doctors initially thought was an acute viral infection. I have yet to recover. Diagnosis: Chronic Fatigue Syndrome—a little-understood illness that is as debilitating as its more justly named cousins that also compromise the immune and neurological systems. My case is particularly severe. I feel as if I have the flu without the fever—24/7. It is so disabling that I was forced to give up my beloved career as a law professor.

At first, I blamed myself for not recovering, as if it were a failure of will, somehow. In addition, I was embarrassed that I wasn’t the picture of good health. This sometimes led me to hide my condition, often to the detriment of my health because I’d fail to take action to care for myself properly.

These two reactions—blaming ourselves for our health difficulties and hiding them from others—are not surprising, given the barrage of media stories and advertisements telling us that good health is within our control: we need only exercise, eat right, and get enough sleep. This simply isn’t always the case. We’re in bodies, and bodies are subject to illness, injury, and aging despite our best attempts to follow these “prescriptions” for good health.

It took an intense moment of physical and mental suffering for me to finally let go of blaming myself for having become chronically ill and to step out from the shadows and admit that I was sick and needed help.

It happened during the Thanksgiving holiday of 2002. I’d been sick for a year and a half, but was unwilling to accept that I could no longer travel to family gatherings. My husband (also named Tony) and I live in Davis, in northern California. I stubbornly insisted on going to Escondido in southern California where, for years, my daughter-in-law’s parents, Bob and Jacqueline, hosted our whole family for Thanksgiving.

I thought I had done a good job of planning the trip to accommodate my illness. On the Tuesday before Thanksgiving, Tony would make the eight-hour drive from Davis so we’d have a car at our disposal. On Wednesday, I would get a ride to the Sacramento airport and fly to San Diego where Tony would pick me up.

As soon as I got into our car and we began the 45-minute drive to Escondido, I knew the trip had been a mistake. My body was aching with flu-like symptoms; my head was pounding in pain. We checked into our hotel and drove to Bob and Jacqueline’s house. After 10 minutes of visiting, I felt so sick that the room began to spin and I couldn’t focus on people. I told Jacqueline that I needed to lie down.

Except for sleeping at the hotel at night, I spent that day and Thanksgiving on Bob and Jacqueline’s bed. As I lay there, I blamed myself for everything my mind could come up with: undertaking the trip in the first place; taking over someone else’s bedroom (which they graciously offered); not helping with food preparation; embarrassing my family (which was all in my mind—they weren’t embarrassed, just concerned); ruining Tony’s Thanksgiving. The list was long because, as the Buddhist teacher Jack Kornfield likes to say, “The mind has no shame.”

I remember vividly how embarrassed and ashamed I felt as I said goodbye to our hosts on Thursday evening. On Friday, Tony dropped me off at the San Diego airport. The flight was delayed two hours. I propped myself up on a chair in the boarding area, bruising my elbow and spraining my wrist as I dug my elbow into the chair’s wooden armrest so I could use my upright arm and palm as a pillow for my head.

I’d arranged for the Davis Airporter, a mini-van service, to pick me up at the Sacramento airport.

When the flight finally arrived, I walked outside the terminal to find that Sacramento was socked in with tule fog-a cold, wet fog that descends on the Central Valley in winter. The van wasn’t there yet, so I sat on my suitcase in the fog. Since getting sick, this was the closest I’d come to collapsing on the ground.

When the van pulled up about 15 minutes later, the driver told me that he had to wait for two other planes to arrive before he could drive to Davis. I got in and lay down on the back seat to wait. The van was unheated and damp inside. Ten minutes. Fifteen minutes. Twenty minutes. My physical suffering was matched only by my mental suffering in the form of the mean-spirited self-talk I was directing at myself.

Then, unexpectedly, in the back seat of that cold, damp van there was a turning in my mind, and my heart opened to my suffering. I realized that I would never speak as unkindly to others as I was speaking to myself. And I knew what I would do if I saw another person looking this sick. So I did it. I sat up, got out of the van, and found the driver.

It was as if I literally and metaphorically stepped out of the fog where, in shame, I’d been hiding my sick state. I explained to the driver that I was chronically ill and asked if he could please call the dispatcher and get permission to take me to Davis. He called, got permission immediately, and drove me home.

That moment in the van marked the beginning of my ability to treat myself with compassion and to be proactive regarding this unexpected turn my life had taken. But the events leading up to that moment are a cautionary tale of how NOT to treat yourself when chronic illness strikes. Don’t wait for a crisis before taking the same care of yourself that you’d take of a loved-one in need.

© 2011 Toni Bernhard, author of  How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and their Caregivers, winner of the 2011 Gold Nautilus Book Award in Self-Help/Psychology

  1. Angela says:

    Wow….I too have become struck with a debilitating illness.  This sounds a lot like me.  Ashamed, embarrassed, sad for taking my career away…all of the above.  This is a great site.  I’m only 36 and I want to find my purpose now since my life has changed.   I want to heal myself inside and out.  Thanks for the wonderful site.
     

  2. Anonymous says:

     
    wonderful fantastic article Ian, yes we sometimes ignore ourselves when we are in fact need the help most, I remember my grandmother who lived may be more 105 years and passed away 2003 she was Arabian doctor, she use to say remember yourself first don’t ignore yourself and if you  forget you need to ‘’have 1 fig + 7 olives each day to exercise and keep your memory’ ’ it is approved to give good memory ‘’,this is a message need to be passed’’
     

  3. ian says:

    thx Angela and healing, peaceful thoughts to you. Toni’s blog is called Straw into Gold, and this is exactly what she has done and what you can do too. Stay in touch.

  4. Coyote says:

    Thank you, Angela. In 1996, I was diagnosed with chronic fatigue syndrome. The following year, I was diagnosed with fibromyalgia. After all that time, I’ve just now started cutting myself some slack, forgiving myself for my falsely perceived weakness, and letting go of the unpleasant emotional responses I used to feel when dealing with insensitive people who (through no fault of their own) cannot possibly understand what I’m going through. I’ve been so closely guarding my heart, that the light of God residing within me hasn’t seen the light of day for over a decade of my precious life. It’s time to release it again. Blessings to you.

  5. Anonymous says:

    Hi Toni,thanx for the article,it gives me courage to do something about my body.I’m actually obese & i’m so ashamed of myself,always blaming myself for not taking care fo meself.

  6. Denise says:

    Thank you so much for this!  This is exactly what I have been doing the last several years.  I was diagnosed in 2000 with Sarcoidosis, went into remission in 2001 and had a severe set back in 2008 which has caused my health to deteriorate.  I have also suffered with the embarrassment of being “Sick again” when I’m out of work.  It’s hard to explain to people who just don’t understand because we don’t “look sick”.  I constantly apologize for being ill and beat myself up about it.  I think mostly becuase I find it too frustrating and my constant Dr’s appt’s make me feel like a hypochondriac.  Slowly but surely, I’m learning…….

  7. Jasmine says:

    I cried as I read this article. I had Chronic Fatigue Syndrome for four and a half years and I now feel recovered (but very changed).  I’m so happy to be feeling better it is already easy to forget what it was like feeling so sick. I too learned how to be very gentle with myself and ask for help, but I had to learn it over and over and over again. I’m still learning this. I send my heart to all who are learning this and living with chronic illness.

  8. Karis says:

    There is another choice besides the black and white thinking of cruelly blaming yourself or telling yourself that you’re powerless and passively hoping doctors can fix you.  There is a huge mind-body connection.  Why not read some books on that?  Louise Hay’s books are great.  So is the National Geographic Film “Stress: Portrait of a Killer”.  It’s not just tension headaches that are caused by mental stress.  Just because that information is not mainstream yet doesn’t mean it’s not accurate.   Evolving our minds is the future for human beings.

  9. Marie says:

    Glad to hear you are in a safe place mentally and physically.  I was wondering about my Mother and I believe Parkinsons, and I would like to help her in the near future.

  10. This article gave me a great ideas on how we can help lift yourself up or break yourself down. I will watch very closely how I speak to others and myself.   lifecoachkevinblake.com
     

  11. Roxanne says:

    It’s so hard to let people know you’re sick sometimes.  This is true for everybody, but when you’ve previously been a high achiever, the guilt and shame are so severe.   Hugs to you.  Take care of you.

  12. Cindy says:

    Ive been ill over 15 yrs, unable to work 13. Alot of the same symptoms as in this article. Any support “people” I had simply have burned out and frankly I dont blame them. Between the walker off & on, & the pain, … Ive now moved to a dif state, seeing dif docs, looking for better health answers. Yes, a persons mind set, thinking positive, and things like meditation helps; But its so easy to just get tired, so tired.

  13. Powerful story, so glad you are now compassionate with yourself.
    Because I believe in a body/mind connection it can become too easy to blame myself when sick. What did I do wrong or what can I do differently? That does not help the situation. I remember in Love, Medicine and Miracles that Dr. Bernie Siegel had a question about what happened in your life two years before you got cancer? Many people were outraged “I’m not responsible for my cancer.” and he agreed with them, that they weren’t in any way at fault and also said, I believe, that stress, grief etc. can compromise the immune system. 
    I’m interviewing a woman today for the Confidence Chronicles on my blog who had undiagnosed Celiac’s for years and her doctors and even her family started to think she was crazy/it was in her head. Since being diagnosed and being wheat/gluten free for a few years she is now healthy but it was a rough road.
    Best of luck to you. Cherry

  14. Great piece. I’ve had and at times still have chronic fatigue with all the usual suspects present- guilt, despair, depression, etc. For a long time I even blocked off and ignored my wife’s loving support, so driven was I about the need to ‘do well’ in life, to achieve. I was heavy into doing being and being laid out. The arrival of a grandson woke me up, as much as Toni’s epiphany in the van and the fog.
    So again, many thanks.

  15. I am not Buddhist, but I find much wisdom in Buddhist perspectives. I agree with the observation that we speak to ourselves internally in ways that we would never speak to others. When we learn compassion for all life, that includes ourselves. We don’t ask to be ill. So why would we be so quick to blame ourselves? Situations will come up – I have 15 chronic illnesses now – but since I gave up guilt and self recrimination, I find that I can laugh, love and find joy somewhere in every day.

  16. The sad thing is that even if we’d never treat anyone as badly as we can treat ourselves, there can be people who treat us even worse, and there may be no one to take care of us. :-/

  17. Totally classic! People who don’t have CFS or Fibro just don’t get it. I’m self-employed and when an attack hits and all I can do is sleep for two weeks, it’s hard to explain to clients. The shame, the anger, the frustration…it’s so hard. We beat ourselves up and feel so guilty—as though it’s something we DID to be a pain…it’s not. I know that in my  head, but my heart and soul still grieve and feel the guilt. Well written. Thank you for sharing…

  18. I can so relate! Thanks for writing this.

  19. Kristal says:

    Moving story. I am sick and been learning similar lessons. Thank you for sharing

  20. susan says:

    Great blog and reminder that we must always love and care for ourselves, not always easy.