8th September 2024

 

  • “Can I try your medicine?” I’m in constant pain. I take very serious, strong pain medication that helps me live my life, but even with the help of morphine there are times when I just can’t wear clothing or even get vertical. I need my medicine to survive, so no, you can’t have any. It’s no party to rely on these pills. Don’t be an idiot and don’t ask for them. We could die from misuse of these drugs.

 

  • “Everyone gets sick and tired. Don’t be such a wuss.” When you’re in pain, it feels even worse to let your loved ones down. It feels unbearable to not be believed. I am a patient advocate, and I write books and articles. I go around the country speaking about pain and healthcare issues. Yet some people I’ve known for decades can’t understand that I have about 50% good days and 50% bad days. I get teased about gaining weight from prednisone—or just gaining weight. A woman I’ve been tight with since we were in out early 20s complained that I talk too much about chronic illness, and it will hurt my on-camera career. Um . . .what career?

 

  • “You look tired.” “You don’t look like yourself.” “You’ve gained weight, Chubs.” Well, the chemo has really been taking it out of me. Thanks for noticing! And it’s true the steroids aren’t doing much for my figure. But I’d rather take my medicine than live up to your beauty standards.

 

 

  • “Keep me posted about your test results.” The last thing I want to do is discuss my personal medical information over and over again. Unless you are wearing a lab coat and I am paying you a bloody fortune for your guidance, I’ll keep this information limited to my close circle of friends—and they don’t need to ask. Sometimes it’s a bummer to think about, never mind talking about it and explaining it.

 

  • “Let me know if there’s something I can do.” I’m trying to manage my life and my illness—you want me to come up with your to-do list also? How about you use your noodle and figure it out for yourself? My sister Kate has a friend who was facing a long series of daily treatments for breast cancer. Her friend has a large family, so Kate and her circle of friends got together and bought a used refrigerator and put it in the woman’s garage. On the door of the refrigerator was a list of what had been delivered and what was needed. When friends and neighbours drove by they would drop off milk, eggs, prepared meals, and household staples.

 

  • “Call me.” Why don’t you call me? Then I can decide if I want to answer. I enjoy a chat as much as the next chronically ill gal, but when I’m down I don’t answer my phone. I can’t deal with the burden of speaking to anyone—it actually hurts to hold the phone up to my ear. If you call and I don’t answer, send a card. I’ll appreciate it.

“I’m not good at this. I’m so upset about your illness, I can’t handle it.”

 

Hey, jackass! It’s not about you. I’m not asking you to donate a kidney. Having to deal with your dramatic overreaction is not helping. I have “friends” who act like my illness is the worst thing that’s ever happened to them!

  • “You’re sick because you work too hard.” Ugh, how the hell do you know? I could be a gold-bricking malingerer for all you know. I choose to fill up my life as best I can with things that make me happy: my friends, my family, working, and volunteering. It’s not like I’m pounding rocks in a Chilean copper mine. I’m just living my life. These are the same jackasses who tell me when I’m bedridden, “You need to get up and around more!”

 

  • “Focus on you. “My spiritual and emotional fulfillment is based not on who I am or what I have, but what I can give. Many of my favourite phi- losophers have suggested that self-fulfillment is found through service. Who am I to argue with great philosophers? I’m a firm believer that life gives to the giver and takes from the taker.

 

 

 

 

 

Tips on how to behave well

  1. Make eye contact. Don’t act like you just encountered a leper you can’t bear to gaze upon.

 

  1. Be supportive, even if you don’t agree with how your friend is dealing with the situation.

 

  1. Be an active listener. Give your friend your full attention. Turn off your phone before you even walk in the door.

 

  1. Don’t pretend it didn’t happen.

 

  1. Don’t talk too much about yourself.

 

  1. Think ahead: What do you think your friend could use?

 

  1. Can you bring pet food? Coffee? Some snacks for her to share with her other visitors? Stamps for letter-writing? If you do bring a little something, make it nice. I think people tend to skimp on gifts for sick people, maybe because they think they’ll die soon so it’s not worth it.

 

  1. Tell the truth. When you lie, the temperature of your nose increases and the redness is called the Pinocchio effect. By all means share the latest gossip—which can have positive physical benefits!

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