Journal of Sacred Work

Caregivers have superpowers! Radical Loving Care illuminates the divine truth that caregiving is not just a job. It is Sacred Work.

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The difference between the right word and the nearly right word is the difference between lightning and a lightning bug. – Mark Twain

 
Patient at rest 1           After Judy was diagnosed with breast cancer she cried. Her tears burned a path to situational depression.

            In addition, Judy found her type of cancer embarrassing. She resolved to let people know she had it but asked family not to say what kind – simply that it was curable.

            But, after her mastectomy Judy faced encounters she later described as “worse than the depression.”

           Her first visitor plopped down on Judy’s bed & embraced her failing to notice that Judy was too fragile to have her bed jarred & too uncomfortable to be hugged. 

           The next friend also hugged her immediately bumping against Judy's still tender chest.  

           Visitor after visitor asked, “What kind of cancer is it?” When Judy mentioned she would rather not say one looked offended sputtering, “Well! I was just trying to show concern!”

           Judy said that even when her brother, who knew her diagnosis, entered the room he immediately looked down at her breasts. “I guess he was trying to figure out which one was missing,” she said.

           Well-intentioned people often worsen suffering with insensitive comments. Loving people act from love, not curiosity. 

           Long experience as a hospital CEO (& now pastor) has taught me a few of the right (& wrong) words.

The Wrong Words

          1) Do not ask the patient about their illness. Why do you need to know? Is it so you can broadcast your friend’s diagnosis?

           Similarly, do not ask the prognosis!

           The patient will tell you what they want you to know. Do not make things worse by being nosey.

           2) Do not share your stories about everyone you know that has had cancer. The patient’s experience is unique. Offer advice only with permission.

           3) Do not say, “I understand how you feel.” Even if you have had cancer, Judy’s experience is personal to her. Telling her you understand demeans her experience.

The Right Words

           What can you say? As little as possible. Your main role is to be present not to talk.

           1) The Golden Rule: Put yourself in the patient’s position. What would you like to hear? The Silver Rule: The patient may not want to hear the same things you would.

           2) Compassion Not Pity. Signal your compassion with loving presence. Pity language is, “I feel so sorry for you.” Instead, try, “This must be so hard.” Or, “I admire you & your courage.” And, best of all, “I love you.”

           3) Thoughts & Prayers? Rhonda, a breast cancer survivor told me what helped her was people saying she was in their thoughts. Praying for someone is fine if you are certain they want that.

           4) Acts: Acts are often better than words. Run errands, offer child care, bring food.

           These same suggestions work for anyone who is vulnerable. The right words from you can harm or heal.

          If you find this article helpful pass it along. 

 -Reverend Erie Chapman

Photoart – "Patient Resting" – by Erie

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8 responses to “Days 19-23 – The Right Words – What to say (and NOT say) to the sick”

  1. ~liz Wessel Avatar

    “Well-intentioned people often worsen suffering with insensitive comments. Loving people act from love, not curiosity.” Thanks so much for your instructive wisdom, Erie. We want to be helpful and it is hard to avoid going into “fix it” mode. I still find myself falling into that pitfall at times. A truly listening presence is a priceless gift.
    Your extraordinary photo is an essay in itself. Soft beauty and the comfort of rest… of being partly hidden and perhaps too, the feelings of isolation that can accompany illness.
    Thank you for today’s gift.

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  2.  Avatar
    Anonymous

    Erie: we as caregivers are reaping your wisdom after your previous tenor as a CEO of a hospital. As nurses we mean well towards our patients and want to support and encourage them. I had an experience when a patient in a home care setting told me that she had pneumonia. With good intention and being supportive I told her “I know how you feel”. She retorted “You do not know how I feel” I was taken aback. Now I understand that the patient’s experience is personal. Thank you Erie.

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  3. Erie Chapman Foundation Avatar

    Thank you so much, Liz. I also really appreciate you comment about the photograph – how a little bit can suggest a lot. It would be great if you could share things you have heard people say (or have said yourself) that are both helpful and not.

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  4. Erie Chapman Foundation Avatar

    Thank you so much for your comments and for sharing your personal experience, Suan. I hope you will share more stories if you are willing, since I am writing a book about this. My email is erie.chapman@live.com

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  5. julie laverdiere Avatar
    julie laverdiere

    Thank you Erie, this is right on. When I share with some people about the cancer I had or what stage it was, I say it doesn’t matter because I am cured and healed, and it is a stage 0! I too have to remember to mostly listen, and keep focused on them and not me. After I went through my treatment, I had 2 very dear friends have to have chemo. It has been a blessing to share with them, but only when they ask. I don’t push.My experience as a caregiver, then a patient has changed me a lot in how I relate to people, especially with cancer. Thank you again for your thoughtful recommendations

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  6. Erie Chapman Foundation Avatar

    Thank you, Julie. I would be very grateful if you could write me and share the following: 1) What do you say/ask now that is different then before? 2) What are some of the things people said to you that made you uncomfortable during your illness? My email is erie.chapman@live.com

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  7. sherry Avatar
    sherry

    thank you Erie,
    As part of the team it was always expected I might fix something, in my career I soon learned that presence and confidence in the patient and the family did more for them than any “fix”. I usually introduced my part on their team as the social worker with this phrase which served me well in this rural setting: I’m not here to meddle or interfere or fix anything that isn’t broken, but to pay attention to what is working well and fan the flame under that. This seemed to be of use to the patient, family and team as it kept the focus on self-determination and strengths.
    You are all a gift to us and those you serve.

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  8. ~liz Wessel Avatar

    Erie, your reflection sparks a great deal of thought and encourages further dialogue. A few past situations related to your topic come to mind. One day, a friend and colleague, Mary stopped by our office. Her husband Jack was receiving chemo and his condition was quite guarded. It was a terribly difficult situation to say the least. A co-worker stopped to say hello and inquired how Mary was doing. Mary explained that they were driving up to UC Norris for treatment (LA County, often a 2 hour drive). Treatment days were long and grueling. This well-meaning co-worker always has a need to point out a positive. She said, “Oh well at least you are driving up there when there is not a lot of traffic.” I was appalled by her insensitive comment.
    When my brother, Johnny was diagnosed with cancer, people always wanted to know what type of cancer it was. It really struck a nerve with me. Especially, when they heard it was lung CA and the comments that followed. I never realized the stigma attached to this type of CA. The insinuation was one of passing judgment; “Oh well, that what happens if you are a smoker.” How many diseases can be associated with life style behaviors, such as diabetes or heart disease, yet I do not see that same kind of prejudice and stigma.
    Lastly, I was in the sacristy at church one Sunday getting ready to serve. Fr. John was there and one of the deacons. He had been diagnosed with a serious melanoma and was receiving treatment. The deacon said to him. “ There must be a reason God gave you this illness.” Although I don’t think she meant it, her comment implied that he was being punished. When she left the room, I said to Fr. John, I do not believe that God would ever give you this illness or want you to suffer. I believe God wants to carry you through this difficult time. He seemed to really appreciate my response and thanked me.
    I think these experiences affirm your illuminating tips and helpful suggestions. Thank you, Erie!

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