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Chronic Illness Workshop Fail

In Chronic Pain Workshop Totally Unprepared for Patient With Chronic Pain, Sarcozona, who is a PhD student with chronic migraine, highlights a serious issue for people with all kinds of chronic illness: Being sick doesn’t come with an instruction manual. When a chronically ill person seeks out guidance, the advice they find is often useless at best; some of it is actively harmful. Sarcozona’s experience in a chronic illness workshop falls somewhere in between, largely because she used it to fuel her own fire rather than internalizing the criticism and bad advice.

She attended a multi-week workshop on living with chronic pain that was developed by a Big Name Medical Center. The program has received high acclaim; I even considered becoming a facilitator for it. Her experience was awful. The facilitator was certainly a problem, but the book the workshop was based on was also terrible. Here’s her take on the book:

“It is also offensive and harmful, suggesting that people who are struggling are at fault for being bad ‘self-managers,’ a phrase I quickly came to loathe. The book constantly minimizes the struggles of patients and oversimplifies and over sells solutions. It almost completely ignores the enormous structural issues they must deal with. The few times it mentions structural issues, it does so in a way that puts all responsibility on the patient – it’s all about ‘managing’ your response (Got the blues because private insurance won’t cover your pre-existing condition and you have to move into the nursing home with abuse problems? Go scrub the bathroom with a toothbrush to distract yourself!). It hardly mentions uncertainty, one of the biggest struggles to living with many chronic conditions. It cites discredited or old and incorrect research in several places or is just downright ignorant or tone deaf.”

(Yes, scrubbing the bathroom with a toothbrush was an actual recommendation for coping with the emotional fallout of chronic pain. When I was at my sickest, scrubbing my teeth with a toothbrush was sometimes impossible.)

That’s only a short excerpt. Take a look at Sarcozona’s original post – it’s insightful, informative and well-written. While you’re there, checkout her other wise writing on migraine.

Not all chronic illness workshops miss the mark. The mindfulness-based stress reduction workshop I did was fantastic. I was frustrated and annoyed with the concepts at the time – “Yeah, like I can think of the pain as a ‘sensation'” and “She has no idea what it’s like to feel like I do” were among my kinder thoughts – but they have changed the way I think about illness and how I approach life in general. In a related secular take on Buddhism, How to Be Sick, by Toni Bernhard, is a great resource. (She’s at work on a book about using mindfulness to cope with chronic illness. I’m eager to see what she has to say and how it complements the MBSR materials). I also recommend Life Disrupted, by Laurie Edwards. It isn’t as directly instructional as How to Be Sick, but contains much food for thought. I’m working on a review of it that I hope to share with you soon.

Have you done a chronic illness workshop that helped you or read any particularly useful books? If so, please share!

7 Responses to Chronic Illness Workshop Fail

  1. Maia Sepp says:

    When I was at my sickest, scrubbing my teeth with a toothbrush was sometimes impossible.
    **
    Ha! No kidding, eh? If I can get to the couch and watch tv I’m having a great headache day – but it’s right beside our kitchen. If my husband empties the dishwasher, the sound of him putting away the silverware is enough to bring me to tears, so I often ask him not clean our (small) kitchen, which makes it a disaster area within a very short period of time. Amazing how regular activities like brushing your teeth or cleaning become so hard.

    Thanks for posting this, Kerrie. I think if a friend told me to distract myself by cleaning I’d probably never talk to them again. Not to be melodramatic, but that’s how offensive that is.

    • Maia, thanks for sharing your thoughts. I’d probably do the same with a friend who said that to me. It shows a deep misunderstanding — and an unwillingness to understand that I just can’t deal with. To have a health care professional who supposedly understands chronic illness do the same is, as Gail says in the next comment, appalling, and is tremendously harmful.

      Take care,
      Kerrie

  2. Gail Post, Ph.D. says:

    As a psychologist, and as someone who also experiences chronic migraines, I find what you describe appalling and, sadly, quite common. Too many health care professionals dictate simplistic and inappropriate “solutions” that create false expectations and despair. Such a shame that so many patients have to arm themselves against clueless and harmful advice. Too many patients, especially women, have been told they are hysterical, exaggerating, or can’t manage their stress. Thanks for posting this.

    • Gail, thank you for your comments. I agree wholeheartedly. I often recommend therapy to people, but I went through many therapists before finding one that I clicked with and who understood chronic illness. I wish there were better options available for people with chronic illness — especially ones that don’t blame the patient!

      Take care,
      Kerrie

  3. Lisa says:

    Hi Kerrie,

    I too loved “How to Be Sick,” and do many of the exercises. Though I felt some of the situations and exercises were definitely more targeted to someone more sick than me. I am not too sick to work (fortunately), but working while sick and balancing of taking care of yourself while others (and yourself) put on you the same expectations on you as they would a healthy person, is a whole different challenge in my opinion. I think Toni Bernhard’s book is very valuable and perfect for what she was trying to write, but I would love a book for anyone out there who is in the position of not being too sick to have to rest all the time, but not feeling well enough to operate “normally.”

    Lisa

    • Lisa, good point. I read it when I was very sick, so it really resonated with me. Have you seen Keep Working Girlfriend (http://keepworkinggirlfriend.com/)? It’s targeted toward women with autoimmune disease, but much of it is applicable to other illnesses, as well. It’s on my very long list of books to review, so I don’t know when I’ll get to it. Rosalind Joffe is the author. She has a business coaching people with chronic illness to be able to stay in the workplace. Here’s her website: http://cicoach.com/.

      Take care,
      Kerrie

  4. Lisa says:

    Thanks Kerrie that looks perfect for me! I’ll take a look!
    Lisa

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