Book Review: “How to Be Sick” by Toni Bernhard (and My Story of Chronic Fatigue Syndrome)

Sara HabeinBooks20 Comments

grandma

During a trip to Disney World in April 2009, I suffered a massive cold. Almost all of us did – my husband, my daughter (then five years old), my mom and myself. Only my 18-month-old son escaped with just a runny nose, but then he had his own porta-crib away from the rest of our germs. All that recirculated air, we said, before downing more Disney-priced Sudafed. Still, it was a vacation, and the adrenaline helped us power through. Soon after we were home, everyone recovered”¦

Except me.

Not until December 2010 – that’s a full 20 months – did I figure out why I felt unrelentingly exhausted, why the lymph nodes in my armpits and along my collarbone felt swollen and inflamed, why the muscles in my arms and legs ached. And why, most of all, these afflictions never, ever went away. After puzzling more than one doctor and physical therapist, and after blood tests came back normal (thus ruling out anything scary/cancer-y), process of elimination led me to Chronic Fatigue Syndrome.

It’s a silly-sounding name, isn’t it? Aren’t we all tired, one might say. Hell, I have a good friend who worked for three months cleaning floors without a day off – starting at 4 a.m., no less. Shouldn’t he be the one who is “allowed” to be fatigued? Shouldn’t I feel silly for having to quit a 17 hour a week barista job because it’s “too much”?

The answer is no. We are talking about two different kinds of fatigue. All the days off and good nights’ sleep in the world will not cure me. I still need them – in fact, they are a priority – but I will still have a chronic illness.

The commonly accepted definition of Chronic Fatigue Syndrome (CFS), according to the Mayo Clinic, is this:

Chronic fatigue syndrome is a complicated disorder characterized by extreme fatigue that can’t be explained by any underlying medical condition. The fatigue may worsen with physical or mental activity, but doesn’t improve with rest.

Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) is an alternative name given to CFS, partially to give it a more serious name, and partly to specify the group of CFS patients whose immune systems continually produce flu-like symptoms.

Myalgic Encephomyalitis (ME) is the name for CFS that is used in many other countries, and I suppose there is a joke to be made about how Americans have to do things “special.” Literally translated, ME means “muscle pain and brain inflammation,” but the symptoms are commonly the same as CFS.

And what are those symptoms?

On July 20, 2011, the Journal of Internal Medicine e-published ahead of print “Myalgic Encephalomyelitis: International Consensus Criteria,” which the CFIDS Association of America summarized here. It’s not a perfect set of criteria, but it has handy visuals and covers it well enough as a start.

But to summarize that, eh, summary, here are some primary and secondary symptoms:

Primary:
Fatigue
Loss of memory or concentration
Sore throat
Painful and mildly enlarged lymph nodes in your neck or armpits
Unexplained muscle pain
Pain that moves from one joint to another without swelling or redness
Headache of a new type, pattern or severity
Unrefreshing sleep
Extreme exhaustion lasting more than 24 hours after physical or mental exercise

The secondary symptoms are not part of the official definition, but are often reported in CFS patients:

Abdominal pain
Allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise
Bloating
Chest pain
Chronic cough
Diarrhea
Dizziness, balance problems or fainting
Dry mouth
Earache
Irregular heartbeat
Jaw pain
Morning stiffness
Nausea
Chills and night sweats
Psychological problems, such as depression, irritability, anxiety disorders and panic attacks
Shortness of breath
Tingling sensations
Visual disturbances, such as blurring, sensitivity to light, eye pain and dry eyes
Weight loss or gain

I experience 100% of the primary symptoms and around 75% of the secondary symptoms to varying degrees. Some days, my leg muscles ache to the point of making walking difficult and other days, they are mild annoyances compared to the armpit lymph node that feels like it wants to burst out Alien-style (you’re welcome for that visual, by the way). Concentration problems abound, and I also have times where my hands forget what they are doing and just let go of whatever I’m holding. (This is also annoying when you’ve just paid for your drink. Or are making someone else’s drink.)

The mental and physical symptoms fluctuate in severity, sometimes by the hour. To put it mildly, I get frustrated. I tire of being tired. This isn’t a sob story; I just want to outline the complexity of this condition and to spread general awareness. Not everyone experiences it in the same way, which makes it even harder to treat, and it’s a relatively “new” illness in terms of scientific study.

Once I had a diagnosis, I started to do a little research on CFS management and studies related to the condition. More than one site recommended reading Toni Bernhard’s How To Be Sick. Bernhard’s suffered from CFS since 2001, contracted after a plane ride from California to Paris left her sick and bed-ridden for three weeks. It’s enough to give a person a complex about flying.

(Particularly one who has irrational phobias, anxiety, and mild OCD, but I digress.)

Despite my connection to her story, and my connection to Buddhism, I hesitated to buy the book at first. Let’s be real – many self-help and health books are shit, and awards aren’t necessarily indicative of quality. However, after reading some of Bernhard’s articles on the subject, where she would talk about mindfulness and allowing yourself to admit weakness, I wanted to know more. How could I live with this new reality of mine without going insane?

First, I could take comfort in synchronicity. I’ve said before, I like it when the things I like overlap. How To Be Sick‘s forward is written by Sylvia Boorstein, a smart woman introduced to me through Dani Shapiro’s Devotion. Boorstein’s metta phrases are written on the inside of my current notebook, and it’s because of Boorstein and Shapiro that some of Bernhard’s Buddhist terminology did not seem completely foreign. I can even draw parallels to Neal Pollack’s Stretch, in which I further acquainted myself with terms like samsara. When I often have no set system for my reading queue, I enjoy it when my choices become, in retrospect, orderly. Meant to be.

The first noble truth – the fact of dukkha [suffering] – helps me accept being sick because that fact tells me my life is as it should be. “Our life is always all right,” says Zen teacher Charlotte Joko Beck. “There’s nothing wrong with it. Even if we have horrendous problems, it’s just our life.”

Life education is everywhere, and when we are ready to listen, it will help us bear our load. The world can be sad, scary and disappointing, but it can also be small, compassionate and inspiring. Bit by bit, my reading has helped me make sense of my mental turmoil and physical pain, and it’s only been recently that I’ve quit trying to power through. Treating CFS is a diplomatic summit, not nuclear war.

Even if I never fully recover (very few CFS patients do), my life is still valuable. My life is still filled with love, and I take comfort where I can.

When I was still debating over keeping my job, I had just started reading How To Be Sick. I’d owned it for a couple of months, but had circled around reading it, afraid of admitting my limitations. Research into the condition can be extremely depressing at times, and I wasn’t sure I was ready. Luckily, Bernhard comes across like a thoughtful and sympathetic friend, and I was glad that I’d finally started reading.

Then, one bad afternoon, I fell onto the bed and sobbed to my husband that I couldn’t stand the physical pain anymore. I hated standing for six hours at work, and even though I truly did enjoy making coffee (I was a barista), my symptoms were always worse on work days.

“I think you need to put in your two weeks,” my husband said. I didn’t know if I agreed, until I read this:

It’s easy to look back and see what a mistake it was to continue working while sick – it probably worsened my condition – but many people who have contracted a chronic illness have done the same. First, there’s the financial need to keep working. Second, there’s the utter disbelief that this is happening to you (reinforced by people telling you that you look just fine – people who don’t see you collapse on the bed as soon as you get home). Each morning, you expect to wake up not feeling sick even though for weeks and then months – and then years – that has never been the case.

I knew I had to quit. I’d survived, barely, for one year, and now it was time to go. The realization, to be honest, made me feel like an asshole. I felt some guilt about the burden on my co-workers, and even more for placing additional burden on my husband. Even though I didn’t make a lot of money, the money still helped.

Still, I had to take care of me. Extra money means nothing when I’m too tired to cook my children dinner. This book has helped me continue my self-care, and for that, I am grateful.

Bernhard writes in a very direct, soothing manner befitting a longtime Buddhist who has the benefit of perspective. Already a grandmother when she became ill, her accumulated wisdom over the years helped her adjust. Yes, she is the first to admit that her symptoms – including anxiety and frustration – still get the best of her at times, but Buddhism has taught her how to bring herself back to the breath. We will fail, but we can always start again.

Each chapter is centered around one facet of dealing with chronic illness, loosely centered around the Four Noble Truths, and the approaches that have worked for her. “You need not be a Buddhist to benefit from the practices in this book,” she writes in the preface:

If a suggested practice resonates with you, truly ‘practice’ it. Work with it over and over until it enters your heart, mind, and body and becomes a natural response to the difficulties you face as the result of being chronically ill or being the caregiver of a chronically ill person.

If a suggest practice resonates – Bernhard is not pretending she knows what will work for everyone, and that’s an important distinction. There is no cure-all for chronic fatigue, and to claim otherwise would be dishonest.

Lest we think that healing and Buddhism is all serious business, Bernhard provides some funny moments as well. In the chapter “Soothing the Body, Mind, and Heart,” she talks about using metta phrases to calm and forgive oneself for being sick. “It’s not my body’s fault that it’s sick,” she says. “It’s doing the best job it can to support my life.”

The trick, however, is to direct that loving-kindness towards others – friends, acquaintances, even those that make us angry – in order to make compassion second nature.

During the 2008 presidential election, Bernhard felt an extreme aversion to Sarah Palin. “I didn’t like Palin’s political positions. I didn’t like her lack of humility when asked about her reaction to being picked as a vice presidential nominee,” she says. Soon she realized that her disdain for the woman was causing her unnecessary stress, and she decided to direct metta at her, even if it felt artificial at first.

“Sarah Palin: May you be peaceful. May have ease of well-being. May you reach the end of suffering “¦ and be free by seeing the error of your ways and becoming a completely different human being.” This is, of course, not exactly what the Buddha had in mind…”

I laughed out loud at that one.

Elsewhere, Bernhard discusses how Zen Buddhism can help shift our perspective, even if we are not students of Zen. “Zen teachings tend to be short and to the point. In addition to koans, they often take the form of gathas – short verses reminding us of our practice – and haiku,” she says.

I also love a book of gathas called The Dragon Never Sleeps by Robert Aitken. His gathas are indeed an exercise in meditation and poetry. Many of them also make me laugh. Poetic mindfulness plus a laugh – great medicine for the chronically ill..

Here’s a sampling of Aitken’s gathas:

When wayward thoughts are persistent
I vow with all beings
To imagine that even the Buddha
Had silly ideas sometimes.

Hey, the Buddha was human too, after all.

Bernhard also deals with more practical matters such as dealing with the loss of friendships, missing out on social events and ways to let our caregivers know we appreciate them. Constant pain can take a mental and emotional toll, I know, and her ideas do help with reeling back in our thoughts that seem beyond control.

How To Be Sick is a book I’d wholeheartedly recommend to anyone dealing with chronic illness, but especially those with CFS/ME, lupus, fibromyalgia, Lyme disease, or any other complex condition that is not easily treated. I’m glad I finally read it, and it’s one I’ll be referring to every time I need a little extra help.

For more information on Chronic Fatigue Syndrome/ME, check out the following sites, as well as Toni Bernhard’s site, also called How to Be Sick:

The CDC’s page on CFS
The CFIDS Association of America
ME Association

And to the people in my life: Thank you for being patient.

(This review originally appeared on Glorified Love Letters, and was part of Cannonball Read III.)

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Sara Habein

Sara Habein is the author of Infinite Disposable, a collection of microfiction, and her work has appeared on The Rumpus, Pajiba and Word Riot, among others. Her book reviews and other commentary appear at Glorified Love Letters, and she is the editor of Electric City Creative.
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Sara HabeinBook Review: “How to Be Sick” by Toni Bernhard (and My Story of Chronic Fatigue Syndrome)

20 Comments on “Book Review: “How to Be Sick” by Toni Bernhard (and My Story of Chronic Fatigue Syndrome)”

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  1. Avatar of Juniper
    Juniper

    Thank you so much for sharing, CFS is something I have wanted to know more about for a long time and your article is excellent! Thank you, again!

    1. Avatar of Sara Habein
      Sara Habein

      Glad you liked it, Juniper. I’ve really enjoyed your Caregiving column as well. My husband has to take on an extra load around the house because of my illness, and I know that sometimes that can wear on him, especially on the bad days where massive mood swings on my part make life more, eh, “fun” for everyone.

      1. Avatar of Juniper
        Juniper

        Thank you! I’m glad you’ve enjoyed the Caregiving articles, it’s actually been a good experience for both Mr. Juniper and I. I mentioned it in one of the Caregiving articles, but Mr. Juniper’s pharmacist said, “Everyone has good days and bad days.” And it’s true, I think we are all capable of having “bad days” and though it’s not quite the same, I do have to remind Mr. Juniper that for all I “put up with” (his words!), he puts up with me, too. Oh, jeepers – hope that makes sense!

        1. Avatar of Sara Habein
          Sara Habein

          Oh certainly, that makes sense. Just because one person has what might be seen as more “serious” problems doesn’t mean that the other person doesn’t have their own things to sort through. We hope to have down periods at different times, but of course it doesn’t always work out that way. Certainly a learning/balancing process.

  2. Avatar of [E] Slay Belle
    [E] Slay Belle

    This is one of the reasons I love P-Mag so much — I don’t think I would have read such a moving, informative book review anywhere else. Thank you for sharing this.

    1. Avatar of Sara Habein
      Sara Habein

      Aw thanks. Yes, my book reviews are sometimes heavy on the “me-me-me” but I think that serves a purpose as well. I mean, that’s what art/books/music do for us sometimes, right? They help us understand our own lives.

  3. Avatar of LittleOrangeElephant
    LittleOrangeElephant

    Thank you for sharing this. I actually ended up with one of the ‘scary/cancer-y’ things – Hodgkin’s lymphoma – but for years before that diagnosis I suffered from extreme exhaustion, depression and fatigue (among other exciting symptoms I’m sure you can imagine!). Now my doctors think it might have been related to the cancer but I spent a long time struggling with my symptoms and trying to explain to people that I wasn’t ‘just tired’ and that it was a legitimate medical issue I was experiencing.

    Currently I’m wrestling with the decision on how much longer to work during treatment so this article really resonates with me. There is a lot of guilt associated with it as well as all of the other points you brought up. Tons for me to think about but it is nice to know I’m not alone in making these decisions in my life.

    I just put a hold on it at the library and look forward to checking this book out. I’ve been curious about Buddhism and incorporating it into my life for awhile but have had no idea where to start. Nice little bit of synchronicity there that ties some current themes in my life together.

    Also – I have to point out that this book came up in the library system right above “How To Be Single” – that’s a whole other post, eh?

    1. Avatar of Sara Habein
      Sara Habein

      I’m so sorry about the cancer. That sucks, truly.  And yes, part of the weird thing with CFS is that it DOES mimic cancer in some ways, so pre-blood tests, I definitely had moments of flipping out at the possibility.

      (This book does help a bit with the flipping out/being worst-case-scenario-person, but it still takes practice. I’m always practicing. And still flipping out at times, ha!)

      The money was a hard thing to lose after quitting my job. Just that little bit made a difference.  We’re in the just-barely-kinda-sorta scraping by mode, but the kids are fed and happy, so we’re ok and slowly finding other ways to make up for it.

      CFS is a recognized disability, but I haven’t yet ventured into the paperwork rabbithole, so I can’t speak to that process yet. But at least it’s considered a real condition by the social security administration, which is something some medical professionals could stand to learn.

      I hope you figure out what will work for you soon, or at least start feeling like you’re on your way.

  4. Avatar of bricorama
    bricorama

    Thank you for sharing! I’ve been experiencing similar symptoms off and on for a while and I’ve been trying to figure out if anything/what exactly is wrong with me.

    1. Avatar of Sara Habein
      Sara Habein

      It really is one of those things where you have to rule out everything else first. And then finding a doctor to take you seriously can also be a challenge — luckily, I have one who recognizes the condition and is somewhat well-informed about it.

      Part of why I wrote this is just because it really isn’t all that well-known of a condition, and contributing the conversation puts the possibility into more people’s minds that they don’t have to just “shake it off” if they have this thing.

      And the symptoms can fluctuate, depending on what’s going on in your life. It can be difficult to figure out what works and what doesn’t. I hope you figure out what your symptoms point to soon!

      1. Avatar of bricorama
        bricorama

        So I have a question for you: what’s this about the recycled air in airplanes making this condition arise in people? Is it just a weird coincidence between you and the writer? … Just wondering, because I rode on a lot of planes between the ages of 0-15… my mom was in the airlines, so we went lots of places…

        But yeah these symptoms have been plaguing me for a few years off and on and they are worse when I’m stressed, which just makes it all worse. I’m trying to finish undergrad and then my goal for 2012 is to just figure out if there’s anything/what is wrong with me. And I get sick of people writing it off as: you’re just stressed! you’re just depressed! you’re a hypochondriac. It doesn’t really seem fair. My dad whines every time he has the sniffles, but I’m just being a baby even though I’ve felt like crap for 3 years.

        1. Avatar of Sara Habein
          Sara Habein

          The recycled air comment is more about how they recirculate the same air that everyone is breathing, and when you get that many different people in one area that’s a lot of germs coming from a lot of places confined to one space. Then you add in the fact that airline crews are not the most complete when they clean the planes in between flights — you know how quick those turnaround times can be — so of course some things get missed, and it’s just germs on top of germs and different surfaces hold onto things longer…. That’s my theory anyway.

          Yes, I was the crazy lady on my last flight with Clorox wipes, wiping down the seat handles and trays in my row. haha

           

          And absolutely I think that stress can aggravate a condition like CFS. And depression is a common condition to have along with it — either it was there already and you’re just noticing it more, or you find it hard to feel not depressed because your body feels like crap all the time. You tire of being tired. I get it, I really do.

          The way I was able to narrow down what I had was to have my doctor run blood tests to make sure that my iron count, white blood cell count, my thyroid, my Vitamin D, all that stuff that they run for most people  getting a physical, to see if they were in the normal range. They were.

          Then I happened to think of this condition — oddly enough I first heard about it because of Cher’s Behind the Music episode, of all things — and looked up the symptoms (which I listed above) and I found that I met almost all of them!

          THEN my doctor ran a blood test to see if I had the presence of the Epstein-Barr virus in my blood. Epstein-Barr is a virus related to mono, and lots of people are exposed to it and are carriers of it, but might never develop symptoms. And not everyone who has CFS has markers for Epstein-Barr, but it happens often enough that it seems to be a particular “flavor” of CFS.

          I had the marker. The theory is that I was exposed to the virus at some point in my life, it hung around in my system, and then when I had another bad virus (the Disneyworld trip), I was unable to kick it and it turned into CFS. That’s the theory — since the pain in the ass thing about this illness is that it isn’t deeply understood yet, so there’s still a lot of  “Ummmm… maybe because of this?” as far as cause goes.

          So it may be a lot of trial and error on your part, but I would think that the first step would be eliminating other conditions as a possibility and going from there.

          1. Avatar of bricorama
            bricorama

            Thank you for going into a little more detail… and yes, planes are so disgusting…

            That’s a very interesting theory on your case… and the Epstein-Barr theory makes a lot of sense, because the symptoms of mono are so similar to CFS.

            I definitely need a physical and a good physician to figure all my crap out. I guess I am most worried to hear what I heard from my gastroenterologist about my GERD/gastritis, “It’s stress.” NO. REALLY? I feel like that’s such a weak excuse for a diagnosis. Everyone has stress in their life and lots of people deal with it poorly. I especially cannot deal with it… but I’ve also been going to a therapist for 3 years and I’ve made a lot of progress and learned a lot of stress management techniques…

            My mom (I talk about her more on here than anywhere else, I swear) is on the fringes of the medical community (she does transcription) and she thinks that a lot of the stress-induced auto-immune issues are really caused by an outside pathogen that has yet to be discovered. I hope she’s right and I hope the medical community discovers it soon, because I’m tired of feeling sick and tired.

            1. Avatar of Sara Habein
              Sara Habein

              From what I understand, chronic fatigue might end up being an umbrella term for more than one condition. Kind of like how eczema and psoriasis are both skin conditions, but are different in their own way. Some people with CFS have problems where their lymph nodes are swollen all the time, but don’t have problems with dizziness or sitting up right, whereas other people it might be the opposite. Both are always very fatigued, but have different things going on. Time will tell, I guess.

  5. Avatar of Savannah Logsdon-Breakstone
    Savannah Logsdon-Breakstone

    what did you *not* like about it? Was there anyone you think this book wouldn’t do as well for?

    It took me Years to realize the amount of pain I am in on a daily basis- that debilitating pain- wasn’t normal, that I wasn’t just a whiner. It took my mother getting a fibro myalgia Dx for me to connect that the pain I was in was very similar to hers- except hers hasn’t been life long like mine has. Ouch.

    1. Avatar of Sara Habein
      Sara Habein

      I suppose if anything, it’s a little light on the “and their caregivers” part. I mean, it will certainly help caregivers understand where the person is coming from better, but there’s not a lot of help in how to deal with being a carer. But given that it was written by someone who was on the receiving end of the care, I can understand how that would not be her area of expertise.

      And also, being written by someone who was already a grandmother when her illness occurred, there aren’t exactly specific tips on raising small children while also being sick, but one could still use the practices and apply them to parenting challenges.

      But overall, it’s a good start and give one plenty to think about.

      And I’m so sorry that you have fibro. My muscle pain isn’t of that specific variety, but I can certainly see how it is related — the same “neighborhood” of annoying, mysterious and chronic illnesses.

       

       

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