I’m doing double duty this month during the A to Z Blogging Challenge. Here at Facing Cancer with Grace, I will focus on caregiving. I’ll also be doing the challenge at Heather Erickson Author/Writer/Speaker, where I will share ways to increase your creativity. I hope you’ll visit me at both sites. While you’re here, sign up for my email list. Today’s post is H is for Honesty: Your Authentic Response.
Let’s be honest, Who Cares about HIPPA?
I was originally going to write about HIPPA for H. But, really, who wants to read about HIPPA.(1) Instead, I thought I would write about something that many caregivers(and patients) tell me they struggle with—Honesty. “Being authentic” might be more accurate. The dictionary defines authentic as “of undisputed origin; genuine.” When someone says something hurtful, or just plain tacky, do our responses come from; our heart, or from a desire to not make waves with others?
In, “The New Etiquette: Real Manners for Real People in Real Situations: An A-to Z Guide,” Marjabelle Young Stewart says that she’s convinced 50% of the people who say something tactless, regret it the moment the words leave their lips. The other 50% have no idea that what they said was tactless. I’m inclined to agree. I also agree with the author that we should usually let it slide, out of our own sense of kindness. However…
Caregivers often end up managing everyone else’s issues.
It’s important to recognize that there is an appropriate response to your situation. Often people accept tactless behavior because the situation is difficult and it’s hard to know what to say. It IS difficult, but that doesn’t excuse people from thinking before they speak. So I would like to pull the curtain aside and expose some of the most common things people say to patients and their family members, which are meant to be helpful but aren’t. I share some of these remarks along with what you might be thinking, and some more appropriate things that your friend could have said. I also share something you can say to help them understand your authentic feelings while maintaining your friendship.
“I know just how you feel.”
Your authentic feelings might be, “No you don’t!”
Here’s why their statement is inappropriate: Everyone is different. Even if they’ve been in a similar situation, this comment can make you feel demeaned. What you really want is for someone to show some empathy.
A more appropriate response to your pain would be, “I can’t imagine what you are going through. I was so sorry to hear the news.”
What you can politely say to stay true to yourself: “I know that you want to comfort me right now, so please understand that my fears and emotions are unique. No one knows just how I feel.” If you trust them and are ready to talk, you can add, “Being able to share a bit of how I feel might be helpful, though.”
“How long does he/she have?”
Your authentic feelings might be, shock, and pain.
Here’s why their statement is inappropriate: You are likely fighting some anxiety about your loved one’s prognosis, even if it’s good. Regardless of the expected prognosis, asking this is assumes the hopelessness of the situation.
A more appropriate response to your pain would be, allowing you to experience your own level of hope or lack of hope. They could say, “How are you doing with this?”
What you can politely say to stay true to yourself: “How long does any of us have? No one has a crystal ball. We are continuing to pray for healing and renewed strength.” Note: This might not be how you are feeling, so by all means, change it to reflect what is in your heart.
“I’m sure you’ll be fine,” “Think positive,” or “Don’t worry.”
Your authentic feelings might be, “You obviously have no understanding of what is at stake.”
Here’s why their statement is inappropriate: This situation usually happens quickly, rather than as a deep, meaningful conversation with a friend. This is someone giving you “preemptive encouragement.” They don’t wait to hear about how things are really going or what you’re feeling. Instead, they give you a dismissive, hit and run dose of, “cheer up!” with no investment on their part. While these phrases are often said to encourage the patient or caregiver, they instead belittle your fears and feelings. They can make you feel very alone.
A more appropriate response to your pain would be, “This must be difficult. Is there anything I can do to help you through this time?”
What you can politely say to stay true to yourself: “I appreciate that you are trying to cheer me up. After hearing what the doctor said, we are feeling quite shaken and need to make the appropriate plans for the future. I would appreciate your prayers for us as we move forward.”
“You just need to have faith.”
Your authentic feelings might be, very full of faith, and at the same time, afraid for your loved one. Men and women of great faith experience tragedy all the time.
Here’s why their statement is inappropriate: This is an especially painful accusation. They are insinuating that because you are struggling, you don’t have enough faith. Statements like this can place an undue burden on you and your family. If your loved one doesn’t get better, does that mean they (or you as their caregiver) have no faith? Phrases like this can imply that.
A more appropriate response to your pain would be: “I’m praying for you and your family to feel peace in the midst of this difficult time.”
What you can politely say to stay true to yourself: “My faith in God is strong, but I still have very real fears.”
“I know just what you should do…”
Your authentic feelings might be, “When you’re in my shoes, you can handle things that way. I’m choosing to do something else.”
Here’s why their statement is inappropriate: It undervalues the situation by slapping an “easy fix” on it. Even worse, some claimed “cures” have resulted in patients with otherwise treatable cancers relying on false promises rather than treatments that can save their life. Also, you may find a wedge between you and your friend if the patient decides not to take their advice. This can happen if you feel like they are pushing an agenda, rather than being a friend.
A more appropriate response to your pain would be, to avoid making any suggestions regarding treatment choices. Those choices belong to the patient alone.
What you can politely say to stay true to yourself: “Thank you for your concern. My loved one and his/her doctor have put together a treatment plan that we feel very good about.”
“Don’t say that! They are coming out with new treatments every day.”
Your authentic feelings might be, “You asked!”
Here’s why their statement is inappropriate: This type of situation often arises when someone is trying to encourage you but doesn’t know how, so they are uncomfortable with the idea that things might not work out. On top of that, they are ignorant of the reality that cancer patients face. Their intention is good, but it stings, especially if you are running out of options for treatments.
A more appropriate response to your pain would be, “I’m so sorry to hear that. What are you thinking of doing?” Open-ended questions are wonderful because they allow you to lead the conversation where you are comfortable going.
What you can politely say to stay true to yourself: “We check the trial website on a regular basis. There is nothing planned for release that treats his/her type of cancer for another year or two. That’s a long time to wait when you have terminal cancer.”
They Don’t Mean Any Harm
Patients and caregivers often remind themselves of this as they lick their wounds. Megan Devine, author of “It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand,” recently wrote a commentary entitled, “Stay Strong,’ And Other Useless Drivel We Tell the Grieving,” that got a bit of backlash. About 90% of the commenters were positive and grateful for her words. It so happens that they tended to be people in grief. The other 10% (non-grievers) weren’t so pleased. “…from those outside others’ pain, I hear: “We’re only trying to help! Why are you so negative?” (2)
Why so Negative?
When I’ve brought this issue up in the past, the results were mixed. People who truly care began to worry that they weren’t saying the right things to their loved ones. My concern is that these caring and kind people may hesitate to say anything at all, out of fear that they might make things worse.
The people who are actually saying/doing hurtful things often don’t care enough to change. I often get the impression that they haven’t read anything I’ve written because if they had, they wouldn’t say such things.
My rule of thumb
How you can know if you are saying and doing the right things: If you are worried enough that you would change what you’re doing if you thought it was being received in a way that is hurtful, you are just fine. You CARE. That’s the important thing. When you care like that, you are sensitive to the feelings of others. The things you say come from a place of authentic concern. It’s the people who are so sure they are in the right that they don’t care what others feel or think that are the problem.
I hope that through these examples you can see that tactless behavior and thoughtless words of others shouldn’t be normalized and excused. Instead, you can be authentic and share politely how you feel. Hopefully, when you do, the person who said something inappropriate can learn from their mistake and be more sensitive to others in the future.
I’m in the early stages of putting together a resource page for caregivers of cancer patients. I’d love it if you’d check it out and email me any suggestions of resources you’d recommend. While you’re here, sign up for my email list to get a periodic email newsletter to encourage you on your cancer journey.
WHAT ARE YOUR THOUGHTS?
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In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.
My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com
Also, put your memories into words with The Memory Maker’s Journal.
I also blog at Heather Erickson Author/Writer/Speaker