It’s Not as Fun as It Looks: Other People and Your Disease
Top Ten Annoying Things to Say to Someone Who’s Just Been Diagnosed
Hate and fear can poison the body as well as toxic chemicals.
—Joseph Krimsky, MD
Nobody plans to walk into someone’s hospital room and blurt out insensitive, inappropriate comments. And yet it happens all the time. If Hallmark had a section for “This is going to hurt you more than it hurts me,” the following phrases would possibly be the top ten best sellers. (And in case you are caught unprepared, I’m including my responses—feel free to steal them or improvise your own!)
Inappropriate comments: when silence isn’t awkward enough.
10. “I knew someone who had that. She died.”
(Thanks for the boost of confidence!)
9. “I know someone who has that; he’s in perfect health.”
(You can’t be in perfect health when you’ve been diagnosed with a serious illness.)
8. “Is that a form of cancer?”
(Ask a doctor, or look it up on the Internet. The appropriate response is not curiosity but compassion.)
7. “Is that a form of AIDS?”
(See comment 8, above.)
6. “God is punishing you because you have a hidden sin in your life.” Or: “The devil is attacking you because you are doing God’s work.”
(Mr. Wizard, Don Knotts, the founder of the Peace Corps, and two serial killers were all diagnosed with cancer. Disease is not doled out on a “who deserves this most?” basis.)
5. “I’m sure it’s nothing. You’ll be fine.”
(Great! I’ll cancel all my doctor appointments.)
4. “Is it genetic?”
(If you’re not my twin, why does that matter right now?)
3. “Have you tried [insert any form of alternative medicine you can think of here]?”
(There’s time for problem solving later. Be a friend first.)
2. “You don’t look sick.”
(You don’t look insensitive. I guess appearances can be deceiving.)
And the number-one annoying reaction to a diagnosis of serious illness:
1. “Is it CONTAGIOUS?!”
(Yes! And you can’t leave until I LICK YOUR FACE!)
When I’ve been the visitor, I’m sure I said something less than perfect. I truly understand now why police are instructed to always say to the victim’s family, “I’m sorry for your loss.” Better to sound like a prerecorded message than to blurt out something idiotic.
Here’s what I wish folks would say:
• “You don’t have to be brave.”
• “I’ve been thinking of you.”
• “I’m sorry.”
• “Can I bring you something?” (Some of my favorite gifts when I’m in the hospital: a tabletop fan, a pillow, my favorite stuffed animal, something to read, my iPod, food that doesn’t taste like cardboard, a funny movie, meditational CDs, a notebook to draw or write in. Thoughtful gifts for someone with lupus, Raynaud’s, or fibromyalgia who is out of the hospital: a heating pad, a Pampered Chef jar opener, a paraffin wax hand bath, hand and foot warmers, a Backnobber self-massager.)
• “I don’t know what to say.”
• “I am praying for you. We are all praying for you.”
• “What can I do for you?”
• “How can I help?”
• “Let’s do something fun as soon as you’re feeling better.”
• “I’m here for you.”
• “Don’t worry about answering all those phone calls and e-mails. People understand you’re not up to it right now.”
• “I’m checking in on your house and your cat twice a day.”
• “I have a cold so I stayed home rather than risking infecting you.” (Thank you!)
Even as we deal with much pain, fear, anxiety, and uncertainty as patients, those around us are also dealing with a lot of emotions. It’s a shock to see someone you care about weak and helpless. Our friends and family feel helpless, too, and afraid. People want to help—they just don’t know what to do. If we give people something to do or say, they won’t feel so helpless, and we won’t feel so neglected. It won’t stop everyone from saying stupid things, but maybe it’ll be a little less annoying if I’m holding my favorite stuffed animal, reading Calvin and Hobbes, and eating some chocolate.
Sometimes It Is Better to Receive
They say what doesn’t kill you makes you stronger. Then it kills you. I’m not afraid of death. However, I, like most people, am afraid of suffering. I’m even more afraid of suffering alone, and this is why some sort of human connection is so important when you’re ill.
One of the most memorable (in a good way) moments from my hospital stays lasted only a few minutes. One evening a worker, not even a nurse, came by when I was upset. I had just been told I would be getting chemotherapy that would leave me sterile and would also be getting transfusions and high doses of prednisone. I was pretty freaked out. This kind person saw me in distress, sat down, and sang to me and held my hand.
She wasn’t there more than three minutes probably, but it sustained me for days. I have no idea who she was. For all I know, she was an angel. Whoever she was, she put aside her own agenda, her own fears, and her own problems for a moment and changed my world for the better.
Other gestures I will never forget were the nurse who brought me pudding after I slept through dinner and the time my friend Laurie snuck in some food for me when I was in the hospital all day waiting for a transfusion. (The doctor hadn’t written a diet order, so the staff wasn’t allowed to feed me.) Laurie was wonderful company, and she took me to some of my appointments when I wasn’t allowed to drive (doctor’s orders; not a commentary on my driving record).
A songwriter I barely knew named Grant Livingston visited me twice in the hospital, after which we became good friends. When I couldn’t play the guitar due to my symptoms, he learned all the guitar parts to my songs so I could still sing them in concert.
I was fortunate to have such generous people cross my path, but it was not always the case. In my first twelve years of having a chronic illness, I had no significant romantic relationships, and for about five of those years, I lived alone. During those years I had little to no help, and I was partly to blame. I was so proud that I was independent—a little too proud—that when someone did offer help, I always refused. I couldn’t even receive a compliment gracefully.
I had to learn to ask for what I need. That does not come naturally to me. I’d rather pretend I have no needs at all. (Of course, pretending I have no needs may have had something to do with my getting into this mess in the first place.) I also had to learn to accept help. At some point I realized that if I continued to refuse help, not only would I make things harder on myself, I would deprive someone else the pleasure and satisfaction of feeling they made a difference. Not coincidentally, once I allowed people to help me, I had a lot more help. Huh. Finally, I learned to say no—to too many activities, to too many visitors, and to spending time with “psychic vampires” (people who drain you emotionally)—and say yes to people who truly cared.
I thought I would rather die than speak up for myself. The thing is, now that my health is stable, I probably won’t die anytime soon—but if I don’t get my needs met, I could just barely hang on for decades, suffering. I would definitely rather speak up for myself than suffer. If I learn to do that, then what didn’t kill me will definitely make me stronger.
Angels with Fur
I read somewhere that a doctor spending thirty seconds by a patient’s bedside is equivalent to standing in the doorway halfengaged for fifteen minutes. Just being there, really being there, even for only a moment or two in a day, to say, “I see you. I hear you. I do not judge you. I’m here for you” is so helpful. You don’t need to have answers. Listening is enough.
You know who are really good at being there? Animals. I’m thankful I had a cat when I was first diagnosed. His name was Slick. He was funny, smart, mischievous, and a lap cat. I adopted him shortly before I got sick and had him for about nine years. He used to sleep in bed with me until I moved into my mom and dad’s house. (Maybe he felt self-conscious, not being married and sleeping together under my parents’ roof.)
One day I went to the doctor and found out I had had a stroke. The following night I was terrified. Since the stroke had happened while I was asleep, I was afraid to go to sleep again. About 3:00 a.m., I heard a scratch at the bedroom door. It was Slick. Somehow, from an entirely different part of the house, he knew I needed him. He jumped into bed with me and stayed there until I got up late the next day. He didn’t even get up for breakfast (and he loved food).
Now my husband and I have a Maltese dog named Easy. She’s a nurse, clown, empath, and angel all rolled into one. She stays with me in bed, no matter how long I sleep. When I was alone and sick, I did not take good care of Slick. (I wasn’t doing such a hot job of taking care of myself.) But as long as I am in a situation where someone else can make sure the pet is cared for if I can’t do it, I will always have a pet in my life. Pets always treat me the same, whether I look good or bad, whether I am able to work or not, whether I am sad or happy.
Some hospitals offer visits from therapy dogs or cats—you may need to ask for this service specifically. And for those institutions that don’t offer pet therapy, sometimes you can get permission to have a pet brought in to visit you. I managed to bring my dog to see my aunt in the hospital. It’s not as complicated as you might think to arrange such a visit, and it’s well worth the effort.
I’m always baffled when people are envious of my health struggle.
I lost a lot of weight when I was sick—food was repulsive to me. I was so thin that I had no butt. I had to carry a cushion with me everywhere because it hurt to sit. Someone had the nerve to say to me, “I wish I’d lose my appetite.” What did I wish I’d said? “I’ll swap you a stroke and kidney failure for a big butt!”
Someone else said to me, “I wish I could just lay around in the bed and read.” You know, it’s okay to have the thought—just don’t say it out loud. If your life is so miserable that you’re envious of someone who’s just been diagnosed with a debilitating illness, maybe it’s time to make a few life adjustments.
Once I heard someone refer to envy as an inner compass. The desire to have what someone else possesses points you in the right direction. So rather than let that somewhat healthy emotion—envy—simmer and turn into resentment, which is toxic, we should pay attention when we feel envy and say to ourselves, “What is it that this person has in his life that I’m lacking in mine?” Upon reflection, you might realize that you don’t really want a stroke or kidney failure; you just need a little “me” time or some attention from a loved one. Meanwhile, it’s okay to have the envious thought—just don’t share it with me.
“On the Commode Again”
(Sing to the tune of “On the Road Again”)
On the commode again
I can’t believe I’m on the commode again
Some people call it makin’ music with a rear end
And I can’t believe I’m on the commode again
On the commode again
Goin’ in places that I’ve never been
Seein’ things I hope I never see again
And I can’t believe I’m on the commode again
You Look Fine
You do not determine your success by comparing yourself to others, rather you determine your success by comparing your accomplishments to your capabilities.
Have you ever told someone about your diagnosis only to have him say to you, “You look fine”?
Maybe it’s supposed to be a compliment. But then why do I want to scream? Probably because in that context what I hear is “I don’t believe you.” You can’t see an autoimmune disease, so how do you know by looking at people how healthy they are? Besides, maybe you’re only seeing the sick person on one of their few good days, the ones when they are up, dressed, made up, and out and about. (On the other hand, I’m glad I don’t always look as bad as I feel. If I did, I’d have long periods of being butt ugly and wouldn’t want to see anyone. But it does create a mental hurdle for folks who can’t believe what they can’t see.)
It reminds me of how we look at other people’s relationships and think, “Oh, their marriage is perfect.” Then we’re stunned when they split up. It’s never smart to compare your inner experience with someone else’s outer appearance. After all, whenever reporters interview the neighbors of a serial killer, the neighbors always say, “He seemed so nice.” We just don’t know what’s really going on behind closed doors and between other people’s ears.
If you want to take it upon yourself to educate someone, you can order pamphlets from the support group particular to your disease. There are societies for most illnesses that provide this kind of informational support. But if you’re tired, or if you feel your words will fall on deaf ears, you can always answer a “You look fine” with a twist on the words of Billy Crystal: “It is better to feel good than to look good, darling.”
Lessons from the Nudist Festival: How Much to Reveal
One of the venues on the acoustic-music circuit is a nudist festival in West Virginia. I’ve played there several times and always enjoy it. Clothing is optional, and, yes, I always take the clothing option.
The first time I played there, I marveled at the courageous men grilling hot dogs and using staple guns in the nude. Then I had to get used to being onstage, looking out and seeing an audience of naked people. Suddenly, that nerve-calming strategy of imagining the audience in their underwear gained new meaning. And urgency.
Then I sat down and had dinner with some of the folks. Now, the “offending parts” were all below table level, and I realized that these nudists were intelligent, interesting people. It was my hang-ups about nudity that made me uncomfortable; the issue was mine, not theirs.
I’d chosen to enter the sanctuary of their inner circle, and I knew going in that they would be naked. I had no grounds for being offended by their choices (they were just nude—they weren’t having sex in the open). They didn’t demand that I remove my clothes, and I didn’t demand that they put theirs on.
When these folks leave the colony, they put on clothes. They don’t try to make the nudity thing work everywhere they go. They blend with the norms of society when they are out in it. It’s not worth the punishment to try to make the rest of the world understand their point of view.
What could this possibly have to do with having a serious illness? More than meets the naked eye.
The nudist colony, a safe place where everyone is a nudist, is like a support group where everyone is struggling with an illness. In the safety of the support group we can “let it all hang out,” be ourselves, and not worry about being judged. If someone comes to the meeting and isn’t sick, he would be really out of line to shout, “Hey! Can’t we talk about something besides illness and feelings? How ’bout those Giants?”
When we leave the safety of the support group, we have a choice: we can remain “nude,” wearing our feelings and problems on our sleeve and talking constantly about our illness, or we can choose to “put on clothes” and try to blend in with the rest of society.
“It’s not fair!” you shout. “I have a right to talk about my illness. It’s bad enough I’m sick, and now I have to worry about other people not being able to handle it?”
You can talk about your illness as nakedly as you want, as long as you are willing to accept the consequences. Just like nudity, some folks are going to have issues with your being sick, not necessarily because of your own hang-ups about being sick, but because of their hang-ups about being around someone who is sick. It forces them to think about mortality, their own vulnerability, or the fairness of the universe, when they’d much rather be out on the beach building a sand castle and believing illness and death could never happen to them. It’s going to stir up fear, and that’s going to make some people say and do hurtful things. This includes family, who have their own very strong emotions about their loved one being ill.
Decide how much of yourself you want to expose. The “clothing” is not really to protect others, it’s to protect you. Rather than try to turn the rest of the world into the compassionate people you wish they were, realize their limitations, stop trying to get blood from a stone, and divulge the gory details only to those who can handle it. Choose your listeners wisely.
Having a devastating illness comes with lots of powerful emotions that need to go somewhere, however. Find yourself a “nudist colony” of safe people where you can be honest about your illness and feelings without getting punished for it. This can be in the form of a healthy support group, where feelings are handled in a compassionate manner. If you can’t find a good one nearby, start one or join one online. And you always have the sacred secret space of your diary or journal, where you can say anything and everything you need to express.
Then, you can put your clothes back on and join the rest of the world, where you can talk about something besides your illness and forget your troubles for a bit. At some point it’s going to be a welcome relief to hear “How ’bout those Giants?” instead of “How are your kidneys?”
How much should you reveal to the world? That’s up to you. A thong? A burka? Something in between? Totally nude? It is your choice, at all times, to choose when and to whom you reveal your illness and the details about it.
Here’s how I handle it. When I’m among other patients, or performing at a health conference, or in other safe environments, I speak about my illness openly. No one in these settings is bothered by such talk, and we have helpful, meaningful conversations. But I’m well aware that out in public—at dinner parties or hanging with friends—folks don’t want to hear about that sort of thing for the most part. So I don’t impose it on them, and I don’t open myself up to being hurt by their fears or ignorance.
If someone asks me how I’m doing, I give a short summary. I’m not dishonest about my symptoms or my well-being, but I don’t usually tell people my diagnosis. Sometimes I just answer, “Good, thanks for asking,” or “Been a little tired, but I’m doing okay,” or sometimes I’ll put in a good word for acupuncture or whatever else I’m doing that’s working for me.
If I know the person a lot better, I give a bit more detail, but I don’t feel the need to go on for long in a social gathering, because I have other, safer outlets for my emotions, and I don’t want “unsafe” people to overhear too much and start asking invasive questions. There’s a time and a place to be naked.