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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.

This entry was originally posted at http://firecat.dreamwidth.org/692225.html, where there are comment count unavailable comments.

Comments

( 24 comments — Leave a comment )
bunnybutt
Oct. 19th, 2010 02:49 am (UTC)
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.
firecat
Oct. 19th, 2010 03:46 am (UTC)
A room of silence! I would like that.
baratron
Dec. 9th, 2010 02:45 am (UTC)
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.
amilyn
Oct. 19th, 2010 03:15 am (UTC)
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.
firecat
Oct. 19th, 2010 03:46 am (UTC)
Thank you for reading.
sophy
Oct. 19th, 2010 03:26 am (UTC)
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......

firecat
Oct. 19th, 2010 03:47 am (UTC)
Yes, I think they are definitely connected.
e4q
Oct. 19th, 2010 07:14 am (UTC)
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...
firecat
Oct. 19th, 2010 06:04 pm (UTC)
It can be very difficult to explain one's needs to relatives!
e4q
Oct. 19th, 2010 06:05 pm (UTC)
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.
firecat
Oct. 19th, 2010 06:15 pm (UTC)
Very wise.
e4q
Oct. 19th, 2010 06:15 pm (UTC)
it's the only way not to be furious with EVERYONE!!!
lisa_marli
Oct. 19th, 2010 08:48 am (UTC)
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.
firecat
Oct. 19th, 2010 06:07 pm (UTC)
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.
elainegrey
Oct. 19th, 2010 01:21 pm (UTC)
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.
firecat
Oct. 19th, 2010 06:08 pm (UTC)
When my therapist gives this compassionate praise it surprises me.

I know what you mean about the surprise.
tylik
Oct. 19th, 2010 01:30 pm (UTC)
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...
firecat
Oct. 19th, 2010 06:12 pm (UTC)
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.
(Deleted comment)
firecat
Oct. 19th, 2010 06:14 pm (UTC)
As if.

Indeed.
purplefrog26
Oct. 19th, 2010 09:08 pm (UTC)
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.
firecat
Oct. 19th, 2010 11:19 pm (UTC)
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.
baratron
Dec. 9th, 2010 02:44 am (UTC)
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.
firecat
Dec. 9th, 2010 07:41 am (UTC)
{hugs}! You are more persistent with your tabs than I am!
( 24 comments — Leave a comment )

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