This article was originally published in the Huffington Post.
by Suleika Jaouad, Cancer Survivor
Introduction by Pat Taylor
As the editor for the Caregiver Section here on CKN, I am always on the lookout for practical information that provides us with the necessary tools to navigate through the confusion and uncertainty that constantly presents itself when we are caring for someone with cancer. Sometimes if we are lucky we get some practical advice that saves us a lot of grief and misunderstanding along the way.
Enter Suleika Jaouad a 24-year-old writer, inspirational speaker and healthy living advocate. She is the author of a weekly New York Times column, “Life, Interrupted”, about her journey with cancer as a young woman.
I first heard Suleika speak at the Critical Mass conference in Austin, Texas last November. She was articulate, poised and joyfully candid in her presentation. The second time we met was at the OMG 2013 Cancer Summit this past April. Again, she spoke with such certainty and clarity that I knew I had to ask her if she had any advice I could share with our CKN readers. I was looking for articles that might fit our monthly theme for June: “What I Said And Wish I hadn’t…What I Didn’t Say And Wish I Had.” She sent me her list, also recently posted on the “Generation Why” blog at The Huffington Post.
by Suleika Jaouad
When I was diagnosed with leukemia last May, I couldn’t imagine what lay ahead for me. The last eight months may have well been eight years. It’s been a blur of blood tests and bone marrow biopsies, fevers and infections. Any cancer patient can tell you that the disease turns you into an ersatz medical student, whether you like it or not. But navigating the social dynamics of living with cancer — communicating with family and friends about my diagnosis, symptoms, fears and hopes — was a challenge I did not expect.
The oncology world is overdue for an etiquette guide. As a commenter noted on my blog, unless you’re Seth Rogen in 50/50, there’s no script for what to say to someone with a life-threatening illness. But if you can avoid saying these 10 things, you’re off to a good start:
1. Don’t ask, “Is there anything I can do?” unless you mean it. If you do, then just do something! When you’re sick, asking for help is tiring — and it can make you feel guilty or pathetic.
2. Don’t ignore someone with cancer because you don’t know what to say. Say something authentic and from the heart (just not anything on this list!). The old joke about voting applies: do it early and often.
3. Avoid questions about mortality. “What are your chances?” and “How long do you have?” are major no-nos.
4. Don’t talk about your friend/cousin/uncle who died of the same cancer.
5. Don’t use nicknames that refer to the person’s disease. They can come off as offensive, even if they’re meant as a joke. These are a few names that I’ve actually been called: fuzz head, baldy, Suleikemia (really?!).
6. Don’t say to someone who’s just lost all of her hair, “You look like [insert: an alien, avatar, Pinky or The Brain, Gollum].” This is not the time for the Beat-poet game of “first thought, best thought.”
7. Don’t put undue pressure on a patient to change doctors or therapies. You may mean well (and you may be right), but be aware that how you offer input can be as important as what you’re offering. What worked for you may not apply to someone else.
8. Don’t just repeat phrases like “everything will be OK” if the patient is feeling scared or upset. Instead, just be a good listener.
9. Don’t tell someone, “Wow, that sucks” upon hearing of their illness. Yes, we know it sucks. Reminders are not necessary.
10. If you say or do something awkward, rude or out of line, don’t pretend that it never happened. Apologize, and ask for a redo! It’s OK to make mistakes. Cancer patients are used to these kinds of blunders. We’ll understand. Just don’t play the ostrich in the sand.
If you’ve made any of these “mistakes,” welcome to the club. I created this list from my own experience, not to inspire guilt or cast blame, but to unite us all in the realization that to talk about cancer is first to fail — then, to “fail better” the next time.
Thank you, Suleika, for providing another tool for our CKN readers. It is a clear, honest and practical tool list for we Caregivers who continue to struggle with what to say and not say to our loved ones as we wind our way along this often unnerving and challenging, yet at times enlightening, roadway of life with cancer.
Suleika Jaouad writes the weekly column “Life, Interrupted” for the New York Times, chronicling her experiences as a young woman with cancer. She is a women’s health advocate and motivational speaker, with a special focus on young adults. Suleika has also been featured in Glamour magazine, Women’s Health magazine, NBC’s Weekend Today Show, NY1, and NPR’s Talk of The Nation and All Things considered. A triple citizen of the US, Switzerland, and Tunisia, Suleika graduated with highest honors from Princeton University in 2010. Shortly after graduation, at age 22, Suleika was diagnosed with myelodysplastic syndrome and acute myeloid leukemia. After almost 2 years of chemotherapy and a bone marrow transplant this past April she is still in treatment and continuing to discover what it means to live a life, interrupted.
Follow Suleika on Twitter @suleikajaouad or visit her blog, Secrets of Cancerhood.