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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