Using CaringBridge Wellbeing

The Only Wrong Thing to Say is Nothing at All

Emily McDowell on empathy

Empathy card creator and lymphoma survivor Emily McDowell said she believes the most supportive thing you can do for someone on a health journey is to be willing to show up, stay present, and listen.

Emily McDowell of Los Angeles, creator of Empathy Cards for illness and grief, and co-author with empathy scholar Kelsey Crowe of the book, “There is No Good Card for This: What to Say and Do When Life is Scary, Awful and Unfair to People you Love,” offers some do’s and don’ts for patients needing support after a diagnosis, and for tongue-tied family and friends.

1. You have written that during 9 months of chemo and radiation after your own diagnosis of Stage 3 Hodgkin’s lymphoma at age 24, you experienced loneliness and isolation when some family members and close friends “disappeared,” because they just didn’t know to communicate. Or they said things that were outrageously insensitive, without even realizing it. Why does this happen—all the time?

People most often shy away because they feel unqualified to help. We’re afraid of doing or saying the wrong thing, and as a result, feeling like we’ve failed. And the fear of failure—and the self-judgment that comes afterward—is so strong that it can prevent people from reaching out entirely.

The first instinct is to spring into “make-it-better” mode

Most of us are taught that feelings of sadness, grief, or anger are intolerable. These things should be “fixed,” solved, or avoided at all cost.

Being solution-oriented serves us well in every-day life, so when someone we care about is suffering, our first instinct is often to spring into “make-it-better” mode, where we immediately try to help solve their problem with our suggestions, questions and ideas.

But it’s impossible to fix a loss or an illness, and trying to do so often results in our saying something insensitive without realizing it, or the suffering person ends up feeling alienated.

The book has been described as a crash course in Humanity 101.

2. The title of Chapter 6 in your book is “Please, NEVER Say This,” and it includes a “collection of unhelpful statements.” Is there an approach to delivering messages of love, hope and compassion to help avoid foot-in-mouth disease?

The most supportive thing you can do for someone is to be willing to show up, stay present, and listen. Remember that a person going through a hard time doesn’t want or need you to try and talk them out of their pain or solve their problem.

Trying to “relate” by bringing up something that happened to you, or a story you’ve heard, can prevent the opportunity for you to learn how the person is actually feeling about their situation. And unbridled optimism can feel like an empty platitude, with the person ending up feeling like you don’t actually want to hear them.

The best way to figure out how someone is feeling is also the simplest: ask them. “How are you?” sounds so basic, but most people will appreciate it. It tells the person that you remember and care about what’s happening, but it doesn’t require a long commitment to a conversation if they don’t feel like talking.

Unbridled optimism can feel like an empty platitude

Sometimes, a better question is, “How are you, today?” If it’s in the first days or weeks after a major, difficult diagnosis, it’s a safe bet that your friend isn’t feeling awesome.

One way to get around this is to ask, “How are you, today?” Adding “today” to your question acknowledges that overall, you’re aware that life kind of sucks in general at the moment, and that you understand there are good days and bad days.

It also takes what can feel like an overwhelming question and turns it into a manageable one.

3. Over the years, CaringBridge users have described “healing” as learning to live with the outcome of illness or injury, even when the outcome does not include cure. How does that fit into your experience as a person who has given and received empathy, in abundance?

In my case, my illness meant that I developed a greater understanding for the breadth and depth of the human experience.

There is pressure to immediately ‘find the silver lining’

I became able to cultivate empathy more easily, and I have many valuable friendships and relationships that I wouldn’t have had without being sick. All of that has enriched and informed my life in really invaluable ways.

That said, I also think there’s pressure to immediately “find the silver lining” in a difficult situation such as illness, injury, or loss; I think a lot of us feel confused if we don’t have a big realization about our life’s purpose or shift in our perspective after coming through something like that. (I blame inspirational quotes!)

I think it’s important to remember that perspective almost always takes time, and first and foremost, we need to be gentle with ourselves and with our expectations while we’re trying to navigate a new reality.

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Comments (42)

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Anne Markham Sep 29, 2018 11:51am
I have an account and I have someone that's keeps it up for me but she's so busy that it takes real quick months to catch up but I'm grateful. I was diagnosed October 29th the day of my local Komen walk with stage 3 femoral osteosarcoma. my name is Ann Marcum for anyone that wants to go check my story out I also post logs and daily or every other day vlogs so everyone is welcome to check those all out.
Oladapo Sobomehin Jul 29, 2018 4:08pm
Go ahead and join me with the three things --most important: 1. TRUTH. 2. IGNORANCE. 3. WASTE. The world wastes-everything that is. Ignorance kills the greatest nation on earth-America. Where is the TRUTH-president of the US--TRUMP governs the greats nation with lies and more lies. American people--many of us love the man for lying all day long. The TRUTH shall set you free. Me too. Stay with the TRUTH.
Joanne Jorgensen Jul 29, 2018 12:19am
I made such a horrible mistake!! My mentor and dear friend died, and I said that he was with so many family members and friends that had passed away; that there was rejoicing in heaven. His wife, who is my very dear friend, said "But, he is not here with me!" Both of our hearts broke because of what I said. My prayer is that she will forgive me and let me continue to love her.
Earnold Jun 08, 2018 11:41am
Lori - Thank you for partially 'getting it'. If you re-read your comment, you'll see that you still insist on qualifying yourself in actions you choose to take, regardless of what this patient stated. It's an in my face because you must have the last word on YOUR Christianity decision. You don't know God better than anyone else. I'm sorry you experienced losing a loved one but that does NOT qualify you to KNOW what the actual victim feels or goes through. I'm sure your intentions are well-meaning but I don't want to hear your verbal commitment to 'The Only One Who is Able'. - That's your belief, again, being shoved at me after me saying enough already. If you're going to pray for me, do it in silence and without me being told about it. My journey is complicated by people wanting an audience to share their witnessing. Please remember what I'm saying - I haven't been in one chemo lab in 14 years with any chemo patient who feels differently than I do. We can't stand it when one of you enter the lab, wanting to pray with or for us. It's smacks of self-centeredness and we wonder if your 'dipping' into our experience makes you feel better about yourselves and gives you something to brag about to your circles. UGH! PUH-Leeze GET THIS and spread this Word.
Lori Dean Jun 06, 2018 10:25am
Dear Earnold, I am one of those who would want to pray with or for you..I find your comment very thought provoking....I've never considered someone feeling that way. So Thank-You. I am no stranger to the agony of a loved one that was ripped from my life ...and treasured the prayers of those who directed my pain and sorrow and yes, terror to The Only One Who is Able . I never considered any other view. I wish I could understand more of your journey.
Shila Hayden Jun 05, 2018 8:13pm
Thank You
Cathy Courtney Jun 05, 2018 2:40pm
Appreciate your experiences Hope & wisdom
Pamela Hale Jun 05, 2018 2:23pm
Thank you. Very helpful reminder.
Selunsfo Jun 05, 2018 10:14am
I lost my daughter 3yrs ago to a very aggressive and rare cancer. She left behind a husband and 5 kids. Also, one of my sons battled met cancer at 19 so i am qualified to speak. The greatest help for us was. regularly saying that you care and want to help if there is anything that you can do. Then ask for specific ways to help and get details of the need. Secondly, organize a meal train, assistance w/house cleaning-if you cannot pay for a cleaner then see if 2 or 3 can chip in to help. If no one can afford it then give of yourself-your time and energy. Amazing what can be done in even an hr. Usually best to have someone in 1 x per week. When my kids were little i had 2 very ill little ones and money was evaporating toward medical costs. One of the best blessings we were given was by a mom who didn't have money but she offered to p/u my laundry once a week and it was always, clean, folded, and hung. She did this for many months. The stress level is high for the family and this help is invaluable. It was much appreciated when friends would volunteer to stay w/ the kids so i could get a break. Taking the person out for a cup of coffee or a meal, or doing something fun is appreciated. It is hard to find joy when fighting for ones life. Offer a bit of joy! Even if it simply means taking them their fav beverage. Little things mean the most. The kids, not the adults, but the kids organized a fundraiser to purchase him an Ipod. One of the biggest helps w/my son's cancer battle was an attorney friend called a meeting of several of our closet friends and organized and wrote a Medical Trust for his finances. Then, it was publicized throughout the community. Another friend held a church-wide yard sale where members and others outside our church donated items to sell. Another friend assisted with travel arrangements as his care was across the country from where we live. Understand, i was a poor single mom and had few resources. My son had no ins but he still received expert care by the very best onco in the country. When my daughter was dying 2 ladies, in particular, began filling the family's need for a mom. -This was critical for her peace of mind as death came closer.There are innumerable ways to help if you look and listen.
earnold Jun 05, 2018 7:11am
I find one of the worst things to say is, 'I'll pray for you', or being asked the question, 'Do you pray?' These people are NOT my spiritual leaders and should keep their beliefs to themselves. Yes, I am angry that they use my terror to exercise their self-centered 'proof' of their so-called christianity. I find they are the most scared of all... Another bad conversation is to tell me all about your family member, someone you know/knew, who battled cancer. That doesn't make you an expert to counsel me or get me to talk about my situation. I don't want to hear it. If you want to know details of how this disease (metastatic breast cancer, 5 times occurrence, you should consult with a doctor and ask those questions. You should've spent more time with your friends/family and expressed your concern/pain for them - please don't try to equate any situation with mine. Your family/friends journey doesn't make you my expert.
Sori Meredith Jun 04, 2018 8:40pm
Thanks. This is very helpful.
Saundra L. Weed Jun 04, 2018 8:18pm
A few more examples of what to say ( instead of explanations of what not to say ) would be more helpful.
Cathy Rice Jun 04, 2018 2:10pm
Thank you for this meaningful article! And thank every one of you who shared and posted your heartfelt, emotion filled comments! We are all in this 'thing called life' TOGETHER!!
Mavis O;Leary Jun 04, 2018 1:33pm
Thank you for adding perspective to one of life's most difficult challenges.
Kim Mennillo Jun 04, 2018 11:43am
I appreciate this perspective on dealing with illnesses and what to say and not say to people going through hard times. The thing I hated hearing most was “You should do all the things you want to do in now while you can...go here, see that...before it’s too late.” Well, you know what? You need money for those things and we just didn’t have it. And still don’t. I implore folks, PLEASE don’t tell cancer patients stuff like this. It makes those without the funds feel even worse. If fate smiles on us and allows us to do expensive things, great! If that is unlikely to happen, please don’t suggest it. We’re just trying to live as large and well as we can right here at home. And often, that’s enough. Thanks for listening.
Mark Jun 04, 2018 11:39am
These are truly words of wisdom. I have learned that not everyone is looking for someone to solve their problem but just to empathize with their situation.
Gayle Jun 04, 2018 9:06am
This article is awesome and right on target! Thank you!
Mark Jun 04, 2018 8:58am
Excellent thoughts. Many years ago, as a young person, I realized the importance of acknowledging when older relatives have something they feel is important to say as they anticipate death is nearing. My previous tendency had been to try to deny death, or to change the subject. I since came to understand that it was appropriate for them to manage the process on their own terms and to respect that process. Once that is understood, we can be freed of the pressure to try to resolve the conversation in an unrealistically optimistic way.
Ann Guidera Jun 04, 2018 8:54am
Thank you very much for this article!!! Having been the recipient of Caring Bridge, I know how absolutely wonderful it is! Everyone who expressed concern for me at the time was wonderful!!! Thank you again!!!
dianne willan Jun 04, 2018 7:40am
I couldn't agree more about "The Only wrong thing to say is nothing at all". I am a two time cancer survivor. I have had a couple of "close friends" disappear from my life and some family members who won't acknowledge my cancer because it is "easier" for them. Cancer can make you feel very isolated and alone along with the fear of the next round of tests/scans. Thankfully there are many support groups.
Joan arnold Jun 04, 2018 7:39am
Excellent article and so true. Lost many friends and family members through my journey. So. Dry sad.
Joan M Haan Jun 02, 2018 2:29pm
My 92 yr old dad after colon surgery wanted to hear, "It's good to see you !" rather than, "how are you?" I've tried to remember doing that . . . .
Sue M Jun 01, 2018 9:19pm
This is very helpful. Thank you so much for making this effort to help those of us who want so much to reach out and be compassionate and loving to our sick friends.
Lynn De Groot Jun 01, 2018 1:28pm
My year 3 I don't want to be asked, "how are you". It's the same or some variation of treatment and I am sick of answering the question. If they say are thinking of me an wish me well then I don't have to respond with anything except, thanks I do agree that staying in touch by a card or a text that doesn't require me to respond again and again the same stuff. All I have to do is thank them.
John C. Barton Jun 01, 2018 1:04pm
Thanks for the wonderful article. Will be very helpful when seeing and visiting others with cancer.
Mike Gunter Jun 01, 2018 11:57am
These are really helpful tips on how to gently show your love or concern by merely being present, rather then feeling compelled to be a "fixer" I was given a death sentence 11 years ago and went thru a full stem cell transplant for a very rare cancer. During the process, Caring Bridge was a wonderful tool for my wife to do a daily posting of my progress or lack of and certain days. I had no desire at that time to talk to anyone.....but I appreciated the words of encouragement and the ministry of people's "presence" when I could view them privately on Caring Bridge. I have been blessed with a complete "cure" from that cancer and feel a special bond to visit with other's going thru this nightmare life journey....but only when they are ready.
Doug Matthews Jun 01, 2018 11:15am
This is really helpful, obviously born of real life experience. I am so glad that you folks shared this with me, with us.
Dawn Wesenberg Jun 01, 2018 10:38am
I have used this site to keep in touch with people that I care about. Great site.
Mary Ann Daigneault Jun 01, 2018 10:17am
Thank you for your insight to the right communication skills with a person going through a frightening disease and treatment. Listening and knowing you care is so important. You have a first hand insight into all the behaviors of people react to the individual or family going through this terrible crisis in life. Again, thank you
Carol Schuler Jun 01, 2018 9:48am
Great article! It confirms what I have learned over the years through caregiving (family members) and through outstanding caregiving classes at church. We all need to remember to"Be present" and "Listen more" in our everyday lives --to, friends, others in need. ♡♡♡
Theresa Ferry Jun 01, 2018 9:42am
I’m elderly and don’t have the money to join ! And you don’t know me or how much I care about my friends! I’m offended by your letter to me! The friends a care about are in my church and I see them regularly!
Mildred Leone (Millie) Jun 01, 2018 7:44am
I am thankful for Caring bridge cause it gave me a way to communicate with a dear friend. Thank God for Caring bridge!
Linda Glass May 31, 2018 3:56pm
I have followed three people via the Caring Bridge site. It was a very nice way to community care back and forth because that way I didn't feel like I was disturbing anyone with phone calls in case they were having a tiring day due to their treatments. All three people had a form of cancer and when they were feeling okay there would be an update on their Caring Bridge site that I could respond to. It was also nice just to be able to send a caring message letting them know I was thinking of them on a daily basis. One of the three people was my sister and her and I talked frequently on the phone but I let her initiate the time of the call due to how she may be feeling. I would recommend this site to anyone going through illnesses that may be terminal in nature. However, it is a great site to give comfort and support for those close to your heart.
Robert Olivier May 31, 2018 12:52pm
So interesting, the downside of leading with what we think are parallel stories with good outcomes, or of resorting to our (maybe ironclad faith-based) optimism. Unfortunately, these impulses draw our inner narcissist out into the open. Things I like about CaringBridge are letting the patient speak first, and fostering engagement for the long run.
Jim Hoyt May 31, 2018 9:45am
Thanks. This is good advice for some other things like Master Gardener work where I volunteer also.
Ruth Wiens Dec 19, 2017 10:28am
Oh my. This is what I've been looking for
Charles Dec 15, 2017 6:01am
Saying, under any circumstances, 'I know how you feel' is ABSOLUTELY WRONG. It is only a gateway to telling grizzly stories about yourself - not what the sick person needs at all. And anyway, you don't.
Charles Kirke Jun 17, 2017 5:52am
On my first ever presentation I received on bereavement as part of my training to be a Lay Reader the presenter said "Be there. Nobody else will". It's true.
Dan Leonard, RN Jun 16, 2017 9:06am
and if the patient has designated a contact person and wants no visits....then what ? yes, cards are a good idea.
Bob and Rita Haslett Jun 15, 2017 10:02pm
We were plesed with Caring Bridge when the Granddaughter was a patient at Cedar Saini. Thank you for Caring Bridge and a goo retirement.
Kathy S Clarke Jun 15, 2017 8:51pm
You and your whole family are in our prayers, every single day! God bless and keep you, and make each day a little better than the day before!
Gerrie Jun 10, 2017 4:49pm
Know that you are loved and thought of with good wishes, John!!