10 Things Never to Say to a Cancer Patient

10 Jan

By SULEIKA JAOUAD 

When I was diagnosed 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 below, unless you’re Seth Rogen in 50/50, there’s no script for what to say and how to act around someone with a life-threatening illness. 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, than just do something! When you’re sick, asking for help is tiring and 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-no’s.
  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 names I’ve actually been called: fuzz head, baldy, Suleikemia (really?!).
  6. Don’t say to someone who’s just lost all of their 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 and ask questions.
  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 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 for most people to talk about cancer is first to fail, then to fail better the next time.

Follow @suleikajaouad on Twitter and on her Facebook Page.

A version of this post appeared on the front page of the Huffington Post on 1/20/12.

Advertisements

15 Responses to “10 Things Never to Say to a Cancer Patient”

  1. southmainmuse January 10, 2012 at 7:34 pm #

    Thank you for sharing with such honesty.

  2. Spencer Walle January 10, 2012 at 8:10 pm #

    You should print this list and publish it in every hospital. Unless you’re Seth Rogen in 50/50, no one gives friends and family a script for how to act.

    • Meaghan January 11, 2012 at 3:39 pm #

      Agreed.

  3. nicki January 10, 2012 at 8:38 pm #

    Thank you for your list. I appreciate the reminder that it is most important to just listen.

  4. Tim January 10, 2012 at 9:19 pm #

    My favorite goes something like: “Live Strong, dude!”

  5. Marie January 10, 2012 at 10:30 pm #

    Having recently gone through two cancer surgeries and six weeks of radiation, I would add two more:
    11. Don’t say “Have a positive attitude.” When I am out of the woods and able to see that I do have a future, I’ll be very positive. Until then, I am doing all I can to keep the anxiety at bay. You have a positive attitude. I am sick and afraid.
    12. Do say “I am sorry you are sick.” or “I wish you well.” or something that reflects that you heard me and you are concerned. That is called listening.

    • suleikajaouad January 15, 2012 at 9:48 pm #

      Thank you, Marie. These are great. I totally agree! Sending you strength and positive energy.

      -Suleika

  6. david Whittle January 11, 2012 at 3:58 pm #

    What an incredible insight/list. Hit all the mistakes people made around me (5 years and 2 years ago). The one I think resonates most is number 2. Its not only deeply frustrating, but leaves you wondering what you did wrong at a time when you really have other things on your mind. Links nicely to be a good listener. You don’t have to say anything, just be there. Its enough!

  7. Robin January 13, 2012 at 7:51 pm #

    Oh my goodness – yes. Can I add one?

    – Well, you look good!!
    What does that even mean? I mean, thanks for the compliment, but I’m not any less sick…

    • suleikajaouad January 15, 2012 at 9:51 pm #

      Or worse, when someone says: “Wow [insert sigh of relief], I thought you’d look worse!”

    • Wendy July 9, 2012 at 11:27 pm #

      I have heard this comment many times during my illness. I was one of the 30% of cancer patients that actually gained weight during my 8 months of treatments. Often people expect you to look like a WWII concentration camp survivor. I would often hear how “wonderful” I looked. Of course, I would magnanimously reply to this statement with, “Well, I feel like CRAP,” Not one of my finest moments, but honest, just the same.

  8. debbie robke January 20, 2012 at 12:40 pm #

    Wonderful blog. I am a survivor of Lymphoma. I too blog about my journey. If it would help you, you can read it at http://www.mylifewithouthair.com I have a resource and education page that you might find informative and helpful. Stay strong.

  9. Lori January 20, 2012 at 12:59 pm #

    I’d like to add another… “You have health insurance don’t you?”. Apparently some people don’t realize that when you get cancer, even if you have insurance, the expenses mount quite quickly and in many cases the income is decreased or lost completely. Last time I checked, my health insurance had no plans to cover my electric bill, or reimburse me for groceries. Having insurance is a blessing, but it certainly isn’t a cure-all for all of cancer’s financial woes.

    • Wendy July 9, 2012 at 11:24 pm #

      That is so true. Though I have long term disability and now have SSDI, I lost my job and my ability to work as a clinical nurse manager. I am single and own my own home, but when I went on COBRA, I could no longer afford my home and my health insurance. I had to choose my health insurance. So, I have just sold my house and will be moving into a much smaller apartment at the end of the month. And, I am one of the very blessed ones. So many others end up financially destitute. Health insurance isn’t even the half of it.

  10. Susan August 12, 2012 at 8:37 pm #

    Suleika, I just discovered this blog after reading your New York Times blog posts for the past few months, and really feeling how much they resonate with my own diagnosis of 6 months ago. Thank you for your thoughtful posts.

    One thing I hear a lot is that ”Someday this will be behind you.”

    Unfortunately, I’ve been told that my cancer, a rare Sarcoma, will be chronic. My doctor compared it to diabetes or hypertension, but that’s a generous comparison. The 5-year survival rate is less than 1 in 3. Even if I beat those odds, I’ll most likely never be in remission.

    So, I’m actually *not* looking forward to the day when this disease is behind me, just trying to make the most of life while I’m here.

    So, what to say to people who offer this hope? It puts me in the awkward position of having to educate them on the grim reality.

Thoughts, questions, feedback on this post? Leave a reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: