firecat | How To Be Sick

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How To Be Sick

I went to a talk on Sunday by Toni Bernhard, the author of How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers. The book is available through Wisdom Publications.

Toni Bernhard is diagnosed with Chronic Fatigue Syndrome.

When I typed "How to be sick" into Google, the second book result that popped up was something called Never Be Sick Again: Health Is a Choice, Learn How to Choose It. I felt angry, because I believe it's a lie that a person's choices can always bring them to full health, and I believe it's a lie that harms people.

Toni Bernhard said at one point that this culture "worships at the altar of wellness." I think that sums up an appropriate response to the "health is a choice" concept.

I'm writing up my notes from the talk here.

Chronic fatigue syndrome is "at the limit of our medical knowledge," in the words of one of Bernhard's doctors.

The term "chronic fatigue syndrome" probably encompasses several conditions. Bernhard spoke of two:

The body has an immune response to a virus and the immune response never turns off.
The herpes virus that causes the childhood disease roseola (similar to measles) is reactivated.

"Chronic fatigue syndrome" is a poor name for the condition because the symptoms are not really fatigue, and the name causes misunderstandings about the condition. (People in an ordinary state of health can be fatigued. CFS feels more like having flu all the time.)

Bernhard said that after she was sick she felt like she was in a "parallel universe" of people with invisible illnesses, who "look fine" to everyone except those who know them very well. She feels conflicted when she goes out—should she make an effort to dress up and put on makeup, which improves her mood but further hides her illness from others, or should she go out "as she is"?

She described giving an interview on NPR and afterward receiving an e-mail that said "I don't want my tax dollars to support an amotivational slacker." She said she was over it now, but it stung at the time. She also talked about the difficulties faced by people with invisible illnesses that cause pain—if they go to the emergency room during hours when their doctors are not available, they get labeled as "drug-seekers."

She spoke of the difficulties faced by family caregivers of people who are chronically ill. The need to be a patient advocate can put a strain on the person. They might need to take on more household tasks. They might feel socially isolated.

Bernhard was a Buddhist for a long time before getting sick. She used to go on retreats, and she spoke of a Buddhist nun she met on retreats, who discussed the thoughts that arise in the mind, and would say in a stern German voice "most of the thoughts are RUBBISH!" (In other words, they aren't to be believed.) Bernhard struggled when she got sick with feeling like a "failed Buddhist" because she was no longer able to meditate in the manner she had been used to (she no longer had the concentration) and she wasn't able to let go of believing a lot of her negative thoughts.

She discussed the Four Noble Truths. The Buddha was a great psychologist. He believed that everyone has a unique mixture of joy and suffering in their life. (Truth #1.) Everyone who isn't enlightened experiences dissatisfaction with the circumstances of their life. (Truth #2.) Enlightenment is possible (Truth #3). She defines enlightenment as not experiencing this dissatisfaction. She focuses on questioning the truth of our thoughts as a method for letting go of dissatisfaction.

Thich Nhat Hanh has a phrase that helps her when she has a belief that's causing her dissatisfaction: "Am I sure?" Another teacher describes "keeping a don't know mind."

Another way of letting go of dissatisfaction is to focus on the mental states that are called the brama-vihara, which are often translated as Love, Compassion, Sympathetic joy, and Equanimity. She described shifting her attitude toward her body from one of "my body has failed me" to a more compassionate view: "my body is working as hard as it can to protect me."

She took questions from the listeners. One listener said that when she developed CFS she needed to shift her meditation practice to one that used a repeated phrase or mantra—it helped her maintain concentration. One listener said she taught medical students and asked what Bernhard would like her to tell them. There was some discussion about doctors' having a hard time with patients they can't cure, and the temptation to blame the patient for the illness if no cure is possible. But some specialties, such as geriatrics, focus on improving quality of life and not just on curing.

I went to this talk because I have chronic health conditions that affect my mobility and energy levels, and I am a caregiver for my mother, who has Alzheimers. I'm a Buddhist and my study of Buddhism has helped me work through grieving over these things and building a life around them, and I wanted to hear a talk that specifically addressed how Buddhism can help a person deal with chronic illness. I figured that I already knew a lot of what she was going to say, but I thought I'd learn a few things and find out that I'm already doing a lot of what there is to do, and that would help me feel more confident.

I especially liked the phrases "Am I sure?" and "don't know mind." I think I will find those useful.

There was some discussion of envy. I've experienced envy when the OH goes to social events such as cons without me. I want to enjoy cons but I mostly don't unless I plan very carefully. It's not because of mobility issues, it's because I get mentally/emotionally exhausted. (Introversion certainly, but also sensory stimulation.) I realized that the reason I experience envy around this is that I don't accept my social limitation. I think I should be able to fix it or get over it. If I can let go of that belief then I might not feel so conflicted around the issue.

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This sounds pretty interesting. As someone who was actively Buddhist for several years and who still approaches life largely from that philosophical perspective, I still have doubts about even the idea of getting rid of dissatisfaction--which, I admit, is a lot better than mainstream culture's idea of eliminating whatever it is that dissatisfies us in the first place, such as illness--but then, in my own particular frame of mind, even the best ideas can be turned into another way to torment myself. It sounds like Bernhard understands that sad, angry, envious, depressed, or other painful thoughts (I'm also uncomfortable with the label "negative" for these kinds of thoughts and feelings) are normal in certain circumstances...even for a Buddhist. ;) It sounds like it took her a while to understand that, which I can really empathize with too.

I have doubts about the idea of letting go of dissatisfaction too, at least in its more radical forms. I do find it interesting and helpful to keep in mind as a possibility but I don't strive for it. If I'm in distress then I sometimes ask myself "What beliefs am I clinging to that might account for some of this distress?" (I first learned to do that in a cognitive psychology context.) I also distinguish between the feelings and thoughts themselves, and the meta-reactions to them. (The ways I torment myself with them, as you put it.) My goal is to let go of the meta-reactions and to hold the feelings and thoughts more lightly.

I agree that "negative" is a loaded description of thoughts; thanks for pointing that out.

Right on--I was afraid after I commented that you'd think I was being critical of you, which isn't how I meant it. "Negative" is the word we commonly use when discussing this stuff, after all. It's hard to find alternatives, and maybe some people don't need an alternative anyway!

I do find it interesting and helpful to keep in mind as a possibility but I don't strive for it.

This makes a lot of sense to me. It's this fine line between obsessing on "improvement" and leaving the door open for changes that allow us to be more at-peace in the world. (Criminy, it really *is* easier to just say "positive change," isn't it. ;)) Yeah, you gotta know what all your options are in order to see what new ways you can try.

Interesting that you should relate this to psychology; I'm a Gestalt person myself, but find what we're doing in therapy to be very much related to what I did/am doing with Buddhism. Lots of observation, lots of seeing thoughts for what they are, lots of compassion as and when possible, etc.

Thank you for writing this. I haven't read "How to be Sick" yet; I'm hoping to get it for my birthday in December, so I really appreciate your notes on her talk.

I most often do not blog about the conflicted inner thoughts about being sick. I think I need to more. Those thoughts and feelings are valid and deserve attention, as long as I don't get bogged down in depression. I need to acknowledge the feelings and let go.

Thank you for your thoughts. They were very helpful to me.

Thank you for reading and commenting!

I have read Toni's book and have been staying in touch with her from time to time. I have MS, but it took 10 years to diagnose me correctly...and a lot of doctors who just didn't listen fully...said unkind, uncompassionate things....made assumptions...it was so painful emotionally. Toni's book is very helpful, and very much in alignment with the way I live with my illness...I am not Buddhist, I'm Jewish, but integrate some Buddhist practices such as metta and mudita into my daily life. Gratitude of course is big for me...appreciating every blessing no matter how small. I'm so happy I found your blog through Toni's fb page...I look forward to learning more about you through your blog.

gentle steps

Thank you for reading and commenting! I'm sorry that it was such a struggle to get a correct diagnosis.

Thanks for this. The last paragraph really resonated for me. I felt like I almost reached a really zen place about it at the food con. People were bubbly and party-happy, and I was sitting in the corner watching them, and for long stretches of time, it was really okay with me that that's just the way I process large-party space. People would ask me if I was having fun, and if I was close to them, I could say, "No, but fun isn't really how I do big gatherings; I mostly just sit on their edges and watch people, and as long as I'm not beating myself up about not having fun, I do enjoy that activity for itself."

People were bubbly and party-happy, and I was sitting in the corner watching them, and for long stretches of time, it was really okay with me

I like that.

You say you weren't having fun. I'm curious what you were feeling/thinking? (Sometimes I feel that people-watching is fun, sometimes not.)

Hmm...

For me, fun isn't really a goal. I have fun on roller-coasters. I have fun swimming. There are times I have fun in silly conversations with people. I'd say I was more in a place of "quiet enjoyment". In my head, "fun" denotes something more active and frenetic than that -- something I can't sustain for very long without wearing myself out.

That makes sense.

When I'm sitting around taking stuff in, often my mind is full of delight and it feels like the word "fun" could apply, although it's not the active, frenetic kind.

(Because I've been thinking about doing it anyway, I'm going to change the title of this journal to reflect that.)

Sometimes, noise is a real factor for me. In a noisy place, I can feel interest and even pleasure, but it's too overwhelming for me to get to a place of delight, I think. (Just pondering the BlogHer Food thing. It was VERY noisy, so sometimes the best time I had was the few minutes I would hide in a bathroom stall. The bathrooms at the Intercontinental are VERY quiet.)

I'll have to come back later and see what you choose for your new journal title. :-)

Noise is a big factor for me too. Street fairs are the sort of social event where I can get to delight—it's noisy, but the noise dissipates in a way it doesn't in buildings.

Once I went to MacWorld wearing earplugs, and I found I could tolerate it for longer.

(The journal name change is proving more complicated than I thought.)

I finally got the new journal title to display! :-)

Thanks for posting this. I would like to read How to Be Sick.

Toni Bernhard said at one point that this culture "worships at the altar of wellness." I think that sums up an appropriate response to the "health is a choice" concept.

Exactly. This makes me think of a post from a while back, at Smiling Buddha Cabaret, What’s Happened to Original Sin? It’s Become Unhealthy. I had thought about some of this stuff in relation to the blame and shame; she also offers some excellent observations on the difference between approaches centered around redemption or enlightenment. "Redemption makes what was bad good. Enlightenment simply shows what is...They are completely different orders of experience."

I realized that the reason I experience envy around this is that I don't accept my social limitation. I think I should be able to fix it or get over it. If I can let go of that belief then I might not feel so conflicted around the issue.

Oh my, yes. I keep finding myself in a very similar position. (Extra fun with a combination of having chronic pain and fatigue, and being somewhere on the autistic spectrum.) I also find myself envying friends who are not dealing with the same things, and get mindboggling amounts of stuff "accomplished"; I tend to start feeling very inadequate and blaming myself for not being able (or willing) to do the same. In a way, it's been easier to recognize the mental garbage, since I keep parroting exactly the same stuff at myself that I kept hearing from other people who did not understand (or care, in some cases) what was going on. But I still have trouble with the same ridiculous looping scripts; at least I'm usually able to see them for what they are and not identify with them now. The "stranger on the street" standard has been useful here, too: would I consider it reasonable to judge a total stranger this way, much less someone I care about more closely? Would I talk to someone else this way? I sure do hope not. And I have learned that it's best just not to engage with other people who are emotionally abusive, so why continue to take the same crap seriously coming from myself? Some self-metta is in order here.

I wanted to comment on more, but have been wanting to write a post about some of this stuff anyway--good prod! ;)

Edited 2010-10-20 15:44 (UTC)

That's a really good article, especially the bit you quoted. I find it very difficult to talk about the different paradigms of Buddhism and the mainstream culture I'm in (JudeoChristianSecularHumanist culture?).

I also find myself envying friends who are not dealing with the same things, and get mindboggling amounts of stuff "accomplished"; I tend to start feeling very inadequate and blaming myself for not being able (or willing) to do the same.

YES. Although lately it's not so much the day to day stuff that my friends accomplish that I feel envious about (although I kind of boggle at it), it's the larger goals/projects they work toward.

Would I talk to someone else this way? I sure do hope not. And I have learned that it's best just not to engage with other people who are emotionally abusive, so why continue to take the same crap seriously coming from myself?

YES. I love my friends who don't do a lot of stuff and my friends who are disabled or have health issues. So why do I simultaneously struggle with hating myself for those same traits?

I don't think I've heard of "don't know mind" before, but I think I live there a lot. I've been conflicted about it at times, because it feels to me like it helps me cope with the world (and my anxieties) to remind myself that I never know the full story, things could be different than I understand them to be, etc BUT I also experience a lot of social pressure not to be like that.

And sometimes "don't know mind" can become indecisiveness that isn't useful, although I'm getting better at "if this decision is hard to make, it's probably that both/all choices have pros and cons and there is no obvious best choice, so it won't matter so much if I make the "wrong" one".

I don't think I've heard of "don't know mind" before, but I think I live there a lot.

I think you do, too, and I like that about you.

BUT I also experience a lot of social pressure not to be like that.

A lot of people think in different ways and it can feel pretty alien to interact with them.

although I'm getting better at "if this decision is hard to make, it's probably that both/all choices have pros and cons and there is no obvious best choice, so it won't matter so much if I make the "wrong" one".

Yeah, I've been struggling with that a lot lately, WRT the decision to move my Mom.

wow, you really are my perfect Con Friend. Me, too. I spent the first half of NOLOSE in my hotel room alone out of sheer overload. I didn't leave my house for a social thing for weeks after NAAFA. I'm thinking it might be time to run a session for people like us, where we all just sit in a room and... not talk. In solidarity.

A room of silence! I would like that.

We routinely have both silent space and quiet space at the UK BiCons and BiFests. Silent space = you're not allowed to talk, quiet space = area provided for crafting where talking is allowed but not expected.

This post is very meaningful to me and I appreciate that you wrote it. I'm going to be thinking about these ideas...how to develop a lack of dissatisfaction, how to have more compassion for "doing as much as possible."

One of my greatest struggles is that if I can imagine something, I tend to think I should be able to make that a reality...and that's simply not true in terms of "getting all the things done."

Thank you for compassionate, thought-provoking, gentle ideas.

Thank you for reading.

Interesting notes, thanks for sharing them.

I especially like the line of worshiping at the alter of wellness. Just as we do with youth. hmmmm......

Yes, I think they are definitely connected.

that bit about whether to put on make up etc or not to resonated with me.

i have real problems with social events, not necessarily knowing the order of things (like at a wedding i went to, where if i had thought to ask to use someone's room a the hotel it was at for a lie down in the middle might have allowed me to stay longer) so not being able to pace myself optimally. on top of which, at that particular wedding getting sort of 'told off' for leaving before i got a chance to have a proper talk with a cousin - sometimes i get away with leaving early from things, other times this 'telling off' or general chiding 'don't leave!' which i am sure people mean well, but actually sounds burdensome to me happens more than i would like.

not that i go out that much - which is another aspect of the problem...

It can be very difficult to explain one's needs to relatives!

i find it hard to explain my needs to myself, let alone anyone else - i try to remember that when other people don't understand.

Very wise.

it's the only way not to be furious with EVERYONE!!!

One of the reasons I frequently leave my husband home is that he too tires out. He can't handle a ton of Must Be Social Time.
I frequently get a hotel room even at the local cons so he can go up to the room and decompress. If he goes home, he may not come back and then miss something he actually likes. Which would be a bummer.
Technically, everything but his heart is fixable. We just can't seem to get it all fixed and kept that way!
Me? Never could get the doctors to claim it is anything - Chronic Fatigue or Fibro or just plain Too Much Stress (sick husband AND sick mother, you think?) I just know it is there, and I'm exhausted.
At least I still like cons. Good thing, I'm treasurer to two of them.

Too Much Stress does seem like an adequate explanation for your exhaustion! But it sucks that your doctors won't work with you to rule out physical stuff.

When I go to a con with the OH, we usually get a hotel room and I spend a lot of time in it.

There's much that speaks to me here, resonating with the work my therapist has been doing with me. Most powerful is understanding so much of what i think of as dysfunctional emotional and mental behaviors compassionately. When my therapist gives this compassionate praise it surprises me.

Thanks so much for posting this, and may your own practice benefit, too.

When my therapist gives this compassionate praise it surprises me.

I know what you mean about the surprise.

Book ordered.

I struggle a lot between the urge to optimize and the urge to accept. They both have some pretty blatant failure modes! I'm not in control of my body and all of the things at affect my body, and there's a lot to be said to just quietly looking at where my body is not and going from there, rather than trying to figure out what I did wrong. OTOH... I have pretty excellent quality of life generally*, and a lot of that is because I'm really pretty proactive on body maintenance and repair. My model isn't nearly as good for dealing with illness as it is for mechanical issues, but while I've been trying to be more gentle with myself when I get sick, I also apparently spent months and months with mold in my air conditioning bents, while I was purposely trying to stop going all "what is wrong? why is this happening" and just accept that yeah, sometimes people get sick. It happens.

* Especially compared with the "you need to accept that you will never live an active life again" prognonsis...

I think there's a distinction between "accepting how I feel right now, and doing what I can right now," and "accepting that I will feel this way forever and I might as well stop searching for potential solutions (personal or environmental)."

I don't believe in nevers and forevers and alwayses because things are always changing.

Sounds like a book I would like.

Re: the "Never be Sick Again" stuff. I just about threw Radical Homemakers across the room for having the very same "name it and claim it" idea about health (and health care!) IOW if you just eat your organic veggies and live out in the country, you'll *never get sick.*

As if.

Thanks for pointing this one out.

As if.

Indeed.

Thanks for sharing your notes. I will check the book out. I struggle with this topic for myself and my clients. I'm a massage therapist and many of them just want me to "fix" them.

For me social situations are much better if I make sure that treat myself well. I've realized that I am much more able to get the connections I want if I take breaks for myself.

For me social situations are much better if I make sure that treat myself well.

Me too. It works better when I realize that doing some of the things is better than trying to do all of them and being completely grumpy.

I've apparently had this post open for over a month without finding the energy to comment on it, which says about all that I need to. Thank you for the perspective, and the book recommendation.

{hugs}! You are more persistent with your tabs than I am!

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How To Be Sick

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