How To Be Sick: Discussion 6

“If you let go a little, you will have a little peace. If you let go a lot, you will have a lot of peace. If you let go completely, you will know complete peace and freedom. Your struggles with the world will have come to an end.” —Ajahn Chah, A Still Forest Pool

As we finish reading the section of the book titled Finding Joy and Love, we read about self-blame, compassion, and equanimity.

“I blamed myself for not recovering form the initial viral infection–as if not regaining my health was my fault, a failure of will, somehow, or a deficit of character. This is the common reaction for people to have toward their illness. It’s not surprising, given that our culture tends to treat chronic illness as some kind of personal failure on the part of the afflicted–the bias is often implicit or unconscious.”

We are introduced to the following three practices, which can be used to cultivate compassion within ourselves:

  • Immediately Make Contact
  • Patient Endurance
  • Opening Your Heart to Suffering
This section closes with a discussion about equanimity, or “mental calmness and evenness of temper, especially in a difficult situation.” This chapter focuses on three categories of challenges associated with maintaining a state of equanimity while living with chronic illness: responding to unhelpful or inaccurate comments from others, living with the unpredictability and uncertainty, and feeling overwhelmed with different losses.

Discussion Questions

  • Do you blame yourself, or have you ever blamed yourself, for having a chronic illness?
  • Grab bag: Which of the three compassion practices–Immediately Make Contact, Patient Endurance, and Opening Your Heart to Suffering
    –resonate most with you?
  • How have you used thoughts of equanimity to respond to unhelpful comments, uncertainty, and loss?

This post is part of RA Guy’s Book Club for “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” by Toni Bernhard. For a complete list of discussions, please click here.

13 Comments
13 comments
  1. Banana says:

    I’ll confess to having fallen behind in the reading (last week wasn’t a good one). But I have thoughts that I’ll post regardless and maybe I’ll add more once I’ve caught up!

    I think I blamed myself for not having done everything I should have done ie: exercised enough – even though the reason I didn’t exercise was because I was in too much pain. But I also think blaming myself, or guilt in general, is a form of control. If it’s my fault, at least I own it. Otherwise, our health is entirely outside of our control, and that’s really scary. So if I think there’s something I’ve chosen not to do, or been too lazy to do, well, then it is still my problem, not something entirely random and chaotic, that I have no control over whatsoever. I’m not sure if this self-deception is a healthy coping mechanism or not!

  2. Nancy Aurand-Humpf says:

    I’m so glad to be back to the book club today. I had migraines for six straight days. It was pretty tough, but I’m catching a break today so I’m glad to be able to participate.

    Have I ever blamed myself? Yes, but not for my Illness. I have always known FMS, CFS, and migraines were not my fault. The thing that has been most difficult for me is accepting that this situation has not only changed my lifestyle, but also my family’s as well. That is where the self blame lies that I want to rid myself of.

    Yesterday was pretty bad. My husband is the restless type. He can’t stand it if he doesn’t get out of the house everyday. Yesterday I asked if he would just shorten his trip out to a couple of hours to take care of our daughter who is disabled so I could sleep. He was a little miffed by my request. He was willing to come home, but not happy about it. I took it very personally. I felt very hurt and on top of the Migraine I cried for the two hours he was gone. I wanted to lash out at him when he returned, but fortunately I had time to cry and cool off. When he got home I told him that I was sorry that things are so hard. I also told him that sometimes I forget that he has to adjust and grieve too. I also asked him very directly if he would reassure me that it was not me he was mad at just the situation. We both hugged and cried. It was very healing.

    You know, it’s been something like a very long street fight for me to accept my illness, I don’t know why i would expect him to be any different.

    Opening my heart to suffering and patient endurance resonate with me.

    As far as unhelpful comments go, I usually feel hurt and angry for a while. I try not to react in a hurtful way, since I ‘ve committed myself to trying to live a compassionate life. Sometimes I have to remove myself from the conversation so I have time to process. I had a friend tell me recently that I’m sick because I haven’t dealt with some deep seated trauma I haven’t dealt with. You know I think in her way she really did want to help me, but I felt patronized, angry, and hurt. Oh, we’ll the tricky thing is that when people make comments like that it can make you feel really alone and less likely to risk sharing the next time. I have to be really brave sometimes to do it, but I need connection with friends.

  3. Jay S says:

    Do I blame myself for this misery? Not really but my head spins – could I have done something differently and avoided this?

    Re: compassion practices – I really struggle answering or being able to answer this. So far with my health I’ve failed at getting past “I don’t feel good” and the feeling doesn’t change and even with HTBS sitting right at my right hand here I’ve been awful at fully appreciating it. I really believe though that I will have a small awakening and the philosophy will break through my “I don’t feel good” wall.

    As for equanimity – yes. I stay active on an online support group and take great pleasure in my humble efforts to help other people as they deal with unhelpful (and worse) comments. I accept my loss easily because it’s so certain and clear. I don’t really feel like things are that uncertain but I hope I can help others.

  4. Toni Bernhard says:

    Hi Banana. That’s an interesting perception — that if it’s your fault, at least it’s something you control and own. If that helps you feel better, who am I to say it’s not a healthy coping mechanism? I just know it wouldn’t work for me. Blaming myself just makes me feel negative about myself and that never makes me feel better. I wonder if others have found your approach to be helpful!

  5. Toni Bernhard says:

    Nancy – The story you told about your anger at your husband but how you turned it into a compassionate exchange with him was so wonderful to hear! Thanks so much for sharing it. I’m inspired by how you handled that — although it does sometimes help if we can be alone for a bit to cry it out before we have to interact with others. I’m sorry to hear about the non-stop migraines and hope they’ve cleared up.

    I get letters from people who’ve read my book who want to diagnose me with things including deep seated traumas (sometimes they say from past lives — which I don’t believe in!). At least an email doesn’t have to be answered, unlike someone saying something to your face or over the phone. Even though people are just trying to help, it adds to our “chronic illness load.”

  6. Toni Bernhard says:

    Hi Jay. My head used to spin with “could I have done something different” — especially since that airplane we took was a last minute change. But I gave it up because, in the end, it doesn’t matter. I’m stuck with the health I have.

    As for not being able to feel compassion, I suggest you just keep that book of mine nearby, read a bit in it each day, and be patient with yourself. Don’t force it. If you immerse yourself in the IDEA of compassion and the other “brahma vihara” practices — maybe by just reading about them — change will gradually happen.

  7. Nancy Aurand-Humpf says:

    Hi Toni, Banana, and Jay,

    I’ve really been thinking about your comments about “owning” some of the things you feel may have contributed to your situation. I think for me I also have regrets that I own for abusing my body in different ways when I was young. The “owning” thing for me is part of the healing I’m going through. I’m trying to to love and forgive myself and have it be ok not to be perfect. It’s easier said than done. I do have guilt and some shame. Shame seems to be very unproductive, so I’m really working on that one. Thanks for your comments, you’ve all given me a lot to think about.

    Jay, I think it’s wonderful and inspiring to me that you are able to help others in your support group.

  8. Mombeenthere says:

    Yes, I am guilty of blaming myself for my illnesses. I think what I blame myself for more is how I have let down the people I’m closest to. The feelings of guilt have never really left despite repeatedly telling myself its not my fault. All it takes is one inappropriate comment (which I’m sure is innocent) to send me on a self meltdown.
    this of course does nothing for stress and keeping RA/CVID at bay so I wind up feeling worse than when I started.
    over the years I have just come to grips with the fact that this is my life now and only I can make something out of it…or not. What others say only hurts me if I give them the control to do so. Which is why groups like this are so important, to give us somewhere to express what is happening to us without being judged or questioned.

  9. Toni Bernhard says:

    Mombeenthere — I talk a lot about overcoming the guilt I felt as letting my family down, but it can still hit me unexpectedly too when something comes up like some babysitting they need that I simply can’t do (this came up recently). I think the difference is that when guilt comes up now it doesn’t grip me. It’s there and I can let it go more easily because it’s not deep-seated. I think I’ve reached that point from repeated self-compassion practice. But, yes, it still pops up for me and it’s hard when it does.

  10. Janine says:

    *Opening Your Heart to Suffering* This spoke to me so much. When my symptoms (spondylitis, uveitis, migraine) start to flare, I sometimes feel a sense of panic, of wanting to escape, and I try to think of ways to stop the pain. In some ways it is probably a very natural response to pain. Pain = emergency. Of course this response, with all its adrenaline, makes things worse. I’ve found that just breathing, one breath at a time, and kind of saying: it is what it is (such a tired cliche I know, but I say it to myself with a kind of funny drawl) help.

    I have a long history of working with young children, and I would often offer empathy when they would get so frustrated. I would say things that showed I was trying to understand, and I’d often say something such as “I know you want that ball. It is hard to wait. I wish it was your turn right now!” In this way, sort of, I open my own heart to my suffering. I soften my heart to hear how I’m feeling, no judging, no trying to escape, and I try not to blame myself (over doing it, not exercising, eating too much chocolate, etc, whatever).

    Toni writes: I made room for fear.
    Yes, it is like that, exactly. Thank you for writing such an important, comforting, inspiring and edifying book and thank you RA Guy for creating this discussion.

    Thank you both for “making room” for our thoughts and feelings here, and for everyone who is contributing.

  11. Toni Bernhard says:

    Janine,

    I’m so glad that that part of the book resonated with you. Not too many people mention that passage, but it was a big turning point for me — finding room in my heart for the full range of emotions that arise.

  12. Rhonda says:

    Ive come to this discussion late, but it is still bery helpful to me. I read Toni’s book 1 1/2 yrs ago when my ME symptoms got so bad that I had to go on disability from my position as a professor of sociology. I was desperate for guidance as I struggled with loss of identity and work that I had worked so hard to achieve and had planned on doing for the rest of my life. The similarity between Toni’s and my situation made her book an even greater source of comfort for me as it spoke directly of much that I had been going through.

    I often repeat to myself and others a valuable lesson I got from the book – that suffering is not the pain, weakness, or any other Physical/emotional toll of our disease – suffering is the response we have to these experiences. That does not mean our pain does not hurt, that it isn’t real or disabling – simply that we can accept the pain, understand that it is a message surging from our body to our brain warning that something is not right, that it is whether we want it or not, and that we accept it as a condition of any ( or for many of us, every) given moment and we do not waste any more of our precious mental and physical resources fighting it. This lesson has given me so much more freedom: by accepting pain as my normal, it has less control over me. This does not mean that my pain does not limit my activities, cloud my thinking and at times, leave me curled up in my recliner, barely able to move. But it does not consume as much as it used to. In fact, by accepting my pain I think I am able to do more – it just becomes one thing to take into consideration as I choose activities. I do take prescriptive pain medication – not the extreme opioids I was on while trying to work full time with this condition – so I’m not suggesting that we don’t do what we can to reduce our pain and other symptoms. Each person must decide for themselves what is needed to make it possible to live the best they can.

    That being said, the truth is that I have been falling back into far less healthy and heLpful behavior since fall. I almost feel like I’m trying to run away from my disease – I know in many ways I’m getting worse and yet I’m doing more and actually feel driven to meet goals ( that I set) and therefore ignoring the needs of my body and mind. Getting up and started in the morning is so hard and involves so much pain, that I don’t want to go to bed again because I’m afraid I won’t have the strength to get up the next time. For some reason, I’ve been consumed by a feeling that there isn’t anytime to waste, that I better do whatever I’m going to or want to do soon before it is too late. So I push through too often, leading to worse symptoms, more severe crashes and a growing anger and frustration at my own limitations and the failure of my partner to be, well, more of a partner. This is all very self-defeating I think and I need to rework my perspective and responses. And that is why I’m so grateful to have stumbled upon this discussion group, however late in the game. It is time for me to reread Toni’s book and look to the wisdom of my fellow travelers through life with chronic illness. I will be reading all of the past discussions and I thank all of you for sharing.

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