Former MTV star Karen Duffy, who is living with sarcoidosis, explains what isn't okay.
For the last two decades, model, actress, and former MTV VJ Karen Duffy has been grappling with sarcoidosis, an inflammatory disease that causes her constant pain. In this excerpt from her book Backbone, she explains the best way you can support a sick friend.
The book of Ecclesiastes contains the proverb, “a faithful friend is the medicine of life.” Good friends are good for your health. No doctor can write a prescription for friendship, love, and laughs. The power of friendship cannot be overestimated. It’s up to us to be good friends to our friends. But some of your friends or even family members may be acting like jackasses, and making your tough row even harder to hoe.
People want the world to make sense. When a great person like you gets sick, it’s not fair, it doesn’t make any sense. You’re a swell pal, why’d it happen to you? It can’t be random, because that’s too scary. If it’s random it might happen to them. So these jackasses have to tell themselves a story, that you got sick because you ate non-organic gluten, or you work too hard, or you grew up in New Jersey. And you’re staying sick because you’re not doing what they bray. These stories soothe the fears your condition provokes in them. The healthy jackasses imagine themselves in the sick person’s situation, and in their mind, they would be sick so much better.
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This isn’t just my theory. I often consult with a brilliant psychologist who studies the psychology of illness in women. She said that healthy people have difficulty conceiving what it’s like to live with a chronic illness. They just can’t face the truth that bad things do happen to good people, and sometimes it’s random chance. If you get a chronic illness, then it could be possible that they could get sick too. And that manifests in jackassery (note: not a medical or clinical term).
Illness and pain are not character defects or signs of weakness. People living with autoimmune and other chronic illnesses are living proof that the human body is a fallible system. Life is imperfect. But victim-blaming has a long and venerable history. In ancient Greece, disabled people were blamed for calamities and cast out of their community. They were made into scapegoats—sacrifices who took the sins of the community on themselves, just as humans used to do with actual goats. My sarcoidosis isn’t catching, but I did lose friends who just didn’t want to be around it. They were too afraid of what I’d become, and their fear made them angry, and their anger drove them from me. So I cast them out of my life. When your friends become a source of stress, it can be even more hurtful because you cared about them.
I went on a talk show to flog my first book, Model Patient. The host asked me about my childhood fear of leprosy. In my book, I wrote a single sentence about growing up Catholic, and how the illustrations of lepers in my children’s bible scared the pants off me. It was just one line in a 300-page book. I didn’t even mention that when I saw the scene in Papillon where the leper’s finger came off, it was all over for me. The host then announced on national TV that I’d given myself sarcoidosis because I was afraid of leprosy. I guess if I’d embraced the wholehearted desire to have leprosy I wouldn’t have gotten sarcoidosis? And shouldn’t I have gotten Hansen’s disease, as leprosy is now rebranded? This talk show host had enough empathy to fill a teaspoon.
I got a letter recently from a woman suffering from a degenerative nerve disorder. She was often too physically exhausted to get up and around. In her letter, she asked for advice about dealing with her mother, because Mommy Dearest had her foot up her backside every day, saying she should be more active, “like that Karen Duffy.” I wrote back to get her mother’s phone number, and when I got it, I called to explain that her image of my life was way off. People only see me when I’m up and around, doing something in public. There are no cameras in my home. The only people who see me in my weak and compromised cavewoman state are my husband and son, and they don’t browbeat me about being lazy when I’m unable to be active. I mean, they mostly don’t.
Researchers have found that people with strong social circles have less risk of depression, and their risk of stroke and heart attack is decreased by 50%. A chronic illness can be socially isolating. The loneliness is difficult to own up to, and it’s hard to explain. When you’ve got a chronic condition, you need the benefits of friendship more than ever. You know that; it’s the jackasses who need to learn. Next time one imposes herself on you, you can read this chapter out loud. Better yet, have them do it.
It’s easy not to be a jackass. Just reach out to someone. All you have to do is be present. Tell her, “I’m here if you need me.” Proust wrote, “Let us be grateful to people who make us happy, they are the charming gardeners who make our souls blossom.” Jackass or charming gardener—take your pick. When my pal was diagnosed with ALS, I was taking courses to be a hospital chaplain. After our kids went to school, I would go over to her house and study. I wanted to be there in case she needed me for anything, but also so she knew she was not alone. I knew she needed to mourn for the life she was losing, and I hoped that my unassuming presence would give her some comfort. I was not going to let her fall into a hole she couldn’t get out of. We didn’t talk very much, and that was fine for her and fine with me. I was close by and ready to help if she wanted it.
Chronic pain patients are 38 times more likely to develop depression or other psychiatric issues. Because of the influence of therapy, aka “the talking cure,” some people seem to feel that a constant stream of chatter is the answer for everything. Therapy is great, but I’m not your therapist, and you’re not mine. A big part of being a good pal to a sick friend, instead of being a jackass, is knowing when to clam yourself.
There are some things you should never say to a person with chronic pain or chronic illness:
“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 neighbors drove by they would drop off milk, eggs, prepared meals, and household staples.
This way the family had meals delivered to their door but they didn’t have to deal with a constant stream of people knocking on the door, adding to their stress. If you want to help a friend in need, ask if there’s something specific you can do—like walk the dog, mow the lawn, take out the recycling, or give her a whipped cream foot massage.
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 favorite 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.
“Don’t take chemo, it’s toxic—it’s rat poison.”
What is toxic is this type of comment from friends. If you don’t know what to say to someone who’s been recently diagnosed with a serious illness, just acknowledge her situation. “I’m your friend. I know you are in pain. I don’t know what to say, but I’m here for you.”
Enduring a chronic illness takes a lot from you; it also takes a lot from your friends. Not everyone who was a friend is going to stick with you, or be the right friend for your new life. The five people you hang out with the most have the greatest impact on your life, so choose wisely.
I keep a pair of beloved four-legged jackasses at my farm, and I’m well acquainted with how to motivate them. I’ve spent a lot of time in this chapter wielding a stick, now it’s time for the carrots—positive things you can say and do when someone’s ill. Knowing how to behave will give you the power and confidence to be compassionate to a sick friend. Here are some quick tips on non-jackassery:
Make eye contact. Don’t act like you just encountered a leper you can’t bear to gaze upon.
Be supportive, even if you don’t agree with how your friend is dealing with the situation.
Be an active listener. Give your friend your full attention. Turn off your phone before you even walk in the door.
Don’t pretend it didn’t happen.
Don’t talk too much about yourself.
Think ahead: What do you think your friend could use?
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.
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!
The isolation of a chronic illness can be as painful as the malady. Aristotle wrote, “A friend is a second self.” Be a second self to a friend in need.
Karen Duffy is a former MTV VJ turned pain patient advocate and author of Backbone: Living with Chronic Pain without Turning into One.
Copyright © 2017 by Karen Duffy. All rights reserved. No part of this book may be reproduced in any manner without the express written consent of the publisher, except in the case of brief excerpts in critical reviews or articles. All inquiries should be addressed to Arcade Publishing, 307 West 36th Street, 11th Floor, New York, NY 10018.
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