What Not To Say

400-05207079 © kentoh Model Release: No Property Release: No Cancer Medical Illness Disease as Concept Art

400-05207079
© kentoh
Model Release: No
Property Release: No
Cancer Medical Illness Disease as Concept Art

I noticed the past 3 years or so, I’ve had friends and family who have taken ill with a serious health problem or some, have passed away after a protracted illness.  Ever since I was young, I’ve always wondered about what to say to the sick person or the bereaved left-behind loved ones, that would express my commiseration adequately and appropriately.  I have learned along the way how inappropriate or unnecessary or unhelpful (even hurtful!) some people’s pronouncements or missives can be.

What not to say or do:

  • “God would not have given you this challenge if He did not think you could handle it.” Or in the case of someone who died, “God wanted to take him/her.” Or, “He/She is with the Lord.”  These references to God don’t really help the bereaved or the sick., even if they are/were religious.  It serves the purpose of comforting the person saying it because it’s as though the suffering was by divine will.  It also assigns to the person saying it the false notion that he or she knows what God wants or does.  What’s more, some people have their own private relationship with their God.  Let’s not intrude.
  • “You look great for someone who’s sick.” Or, “Oh, you still have all your hair.” And to those lying in state, “He/She looks good, like he’s just asleep (and not dead).”  People who are in the deepest depths of their misery from pain are too preoccupied feeling unwell or getting by day by day to even think for a minute about what they look like.  What’s more, it may make the sick feel as though you don’t believe they’re really sick because they may not have external manifestations of their illness, which could be quite serious.  As for the dead, what do we expect them to look like?  Ghoulish?
  • There are those who start theorizing about your nutrition habits. Some examples are, “Maybe you did not eat enough vegetables.” Or, “Maybe you ate too many vegetables and not enough meat and milk.”  Or, “Maybe you should have taken your vitamin C religiously every day.” Or, “Maybe you drank too  many acidic fruits.”  “You should have followed the monthly cleanse diet. Or the South Beach diet. Or whatever diet.  A lot of times, health problems like diabetes, cancer, autoimmune diseases are multi-factorial. Or, there may not be a logical reason why people get afflicted with them.
  • “What did you do to deserve this?”  Now this is downright insensitive and even judgmental. It assumes that the sick or dead person is bad or has done something heinous so as to deserve this suffering.  I’d show this person to the door and slam it on their face!
  • “I’m sure you’ll be fine.”  Well, what if you don’t get to “fine?” What if you have Stage IV cancer or Diabetes or Lupus?  We all know that these are chronic and the road will be tough and it’s a slow (or fast) deterioration.  This statement comes across as dismissive of a person’s suffering.
  • Then there are those who think very simplistically, even naively, about illness and all its surrounding cohorts, would say, “See the doctor and get treated. End of story.”  Another dismissive message.

funeral-mass-an-encouragement-to-the-bereaved-family-15When my mother-in-law came home after a horrific collapse and subsequent ICU admission, I saw her children take turns to spend time with her.  There were many occasions when they would watch TV with her. Other times, they told stories of the past or updates on various family and friends.  They would eat with her, help her with her grooming or getting in and out of bed.

I used to find our friend Jenn Uy inside my parents’ room sitting beside my dad.  He would be watching TV and sometimes, she would watch, comment on something, or she might read a magazine, or even nap on the chair beside him.

Sometimes, for the sick or the bereaved, spending a small amount of time with them, not having to talk much, just being present, is enough.  It sends the message, “I’m here to spend time with you. You don’t have to do anything.  I’m here if you want to talk or just sit.  There’s no added pressure to socialize or have to add to your burden.”  (But Jenn has moved to Toronto with her family and my dad doesn’t get to see her anymore.)

Gloria Steinem presents Letty Cottin Pogrebin ...

Gloria Steinem presents Letty Cottin Pogrebin with the Making Trouble/Making History Award (Photo credit: Jewish Women’s Archive)

I recently listened to City Arts and Lectures presentation by Linda Hunt when Gloria Steinem and Letty Cottin Pogrebin guested at the Nourse Theater in San Francisco.  These two strong independent women trail-blazed many programs to foster the women’s movement and equal rights.  Think founding mavens of Ms. Magazine.  We owe a lot to them for so many freedoms we can enjoy today because they dared to express it, print it, protest about it, and lobby about it persistently and unrelentingly.

In this conversation with Linda Hunt in front of a live audience, Letty spoke about her diagnosis of cancer and what she learned about it as she went through the entire experience of diagnosis and treatment.  She talked about her not wanting many people to know about it at first.  She did not want to have to answer too many questions or bear with the buzz-buzz of gossip.  She talked of friends who disappeared once they found out or friends who would not mention anything about the “Big C” when they saw her.  She ended up interviewing many people who like her, had a chronic illness.  She recently published a book, “How To Be A Friend To A Friend Who Is Sick.”

How To Be A Friend To A Friend Who's Sick by Letty Cottin Pogrebin, Photo Courtesy of Patricia Wall/The New York Times

How To Be A Friend To A Friend Who’s Sick by Letty Cottin Pogrebin, Photo Courtesy of Patricia Wall/The New York Times

Here are some pearls I took from that conversation:

  1. People are mostly well-meaning. But many times, there is an awkwardness with situations they themselves may not be comfortable dealing with.
  2. Open ended questions, not cliché questions like, “How are you?” are better. Let the sick or bereaved person talk. Or not talk. Let them decide how much they want to reveal. And respect that.
  3. Call in advance before you show up. They may be feeling unwell from treatments and can’t really spare the time to look decent for you to sit with them and socialize.
  4. Forget the flowers and the basket of fruits. The sick feel too sick to eat anyway. Instead, offer things like a cleaning lady who can come one time to tidy up their home/apartment.  They are obviously too sick to attend to this but tidying up might help alleviate the “sick environment.”  Or, if the person likes to garden and is too sick to maintain the garden, pay someone to weed, cut the grass, etc. These gestures may be more appreciated that flowers allowed to wilt or fruit that goes bad after a few days.
  5. Don’t be driven by guilt to have to visit.  Letty said that all those etiquette norms from the old days may not work in these situations.  Certainly not the “have to’s.”
  6. When you do visit, don’t overstay.  This is even if you traveled a long distance.  The sick person may not have the stamina for hours and hours of conversation.
  7. There is always the shame factor among the sick.  This is especially true for men because illness can be emasculating.
  8. Let the sick person or the bereaved talk.  Let them express their fears, regrets, anxieties.
  9. Humor is always welcome. They say that laughter is the best medicine. Don’t be insensitive though.
  10. Ice Cream is always welcome.
  11. Weed is a great gift.  It allows the sick to sleep (relaxes and sedates) and eat (anti-nausea factor and appetite-stimulating factor).
  12. Let the sick bring up the topic of death and dying.  Follow their cues but suppress your own discomfort with death and dying.
  13. Be there, physically present, but not oppressively.  Don’t overwhelm them with care.  It may be intrusive already.
  14. If someone just died, talk about some anecdotes about the deceased.  Offer a memory.  A good one at that!

When Letty was asked what she appreciated her friends did for her, she said that she appreciated them coming to sit with her, hold her hand, and not necessarily have to talk.  Just the mere physical presence was enough.  It conveyed to her the person’s support and accessibility to her.

I’ve taken the time to read Letty’s book. Now I want to read her other books. I find her writing very candid and conversational.  Lots of great ideas stemming from real experience.

I’m not sure if I’ve been appropriate or adequate in my addressing loved ones when they are hurting or have someone close pass on.  I do suffer through my sense of feeling inadequate when I’m confronted by this time and time again.  I want to show how deeply I feel for the other person.  But I’ve learned that sometimes, I have to be mindful of their needs and not feed into my tendency to satisfy some irrational need to validate my ability to empathize.  Or maybe I just feel sympathetic (share in the suffering) towards the other person and I want to genuinely be of help.

Recently my own hubby went through surgery with a difficult and prolonged recovery punctuated with much pain (and he’s known to be stoic) and disruption of his routines and usual comforts.  I found that I had to suppress my desire to provide too much care, to be too present, almost hovering, and to be mindful of his need for his space, his privacy.  (I also had to convince our dog, Beau, to give him space.  Okay, so there were times, I had to drag him away by his collar. See post on the guard-dog-wanna-be.)  I know I have learned some valuable lessons from this experience.

Have you had a similar experience?

P.S. The other patient in the house is also slowly recovering.  (Click on post on his near-death experience here.)  See Beau below sitting up and without his collar!  He’s sitting up, able to walk around and socialize. He’s even wanting his dose of hugs and kisses now.  But he’s lost quite a bit of weight.  We need to build on the weight and the muscle mass again.

Beau at Four Weeks After Being Sick, (c) Likeitiz

Beau at Four Weeks After Being Sick, (c) Likeitiz

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This entry was posted in Breast Cancer, Cancer, Chronic Illness, Death, Empathy, God, Health, Illness, Mindfulness, Women's Health and tagged , , , , , , , , , . Bookmark the permalink.

19 Responses to What Not To Say

  1. great post. it is hard sometimes to know what to say. a simple “i’m sorry this is happing to you” always seemed to me the best way to acknowledge it and then hopefully move on to other comforting or distracting conversations or the simple quiet of support. you have done a lot of good with this post.

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  2. Coco Di says:

    Thanks for sharing these tips. Very enlightening and I’m impressed! Good job on this one! Now I have more ideas what not to say.

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  3. ristinw says:

    Now I know that I said something wrong…I have to bare in mind…Thanks for your tips and the book you mention. 🙂

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  4. Mary-Ann, This is an important blog presentation and you did it so well. I believe I must purchase a dozen copies or more of ‘How To Be A Friend To A Friend Who’s Sick.’ I could leave them around the house and/or give them as gifts. Of course I want to keep one for myself to read.

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  5. writetowag says:

    First of all… Thank you for posting this today…This is a GREAT post and I hope many read this in full. Hugs and all the healing they can hold to both your “beaus”!!!! Why do so many remain selfish when a friend or relative becomes ill? It seems as though some focus more on how their loved ones illness affects themselves…You truly find out who your real friends are when you become ill…I remain ever thankful for those who truly care for me…My dog is a perfect example of unconditional love…Treats for Beau!!!!

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  6. patriciamoed says:

    Very wise and thoughtful advice! Thanks.

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  7. Well written and very perceptive. I had treatment for cancer a few years ago and everything you summarised in the book is true. Best offer if help I had was a cleaner! And this year a friend of mine is seriously ill with cancer and we’ve pooled resources to get her a cleaner too. I think also reminding each other that the person is ‘living’ with a life threatening disease puts a different perspective on things rather than saying they are ‘suffering’, ‘dying’, ‘fighting’ etc etc. just my thoughts from both sides of the fence 🙂

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  8. M E McMahon says:

    What a great post. When my SO was in the hospital for two weeks, people got very angry with me when they would ask to come to the hospital to visit and I put them off. I knew his feelings about people thinking a man in a sick bed wanted to visit and socialize while in pain, under medication and worried about his future health restrictions. Although the friends are well meaning, the hospital is a place to rest and recuperate..not throw a party. A steady stream of long staying visits doesn’t promote that.
    Again, great post and as usual, Bastet reblogged a really good one!

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  9. Madhu says:

    A beautiful and very helpful post Mary Ann. Hope Beau gets back to normal soon 🙂

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  10. lidipiri says:

    I have a close friend going through intense chemo and radiation and what you wrote is such a great guide to follow!
    It is our discomfort with a disease and our need to make it better (even when it will not) that leads to our inability to actually be of comfort. Thank you for writing this.

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  11. Bastet says:

    Reblogged this on Bastet and Sekhmet and commented:
    This is a wonderful and thoughtful post which helps us all, the sick, the bereaved and those who are their friends and loved ones.

    Like

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