Heroes are hard to come by these days. Maybe that’s why the smiling cancer warrior gets so much admiration. There is an unspoken rule that cancer patients are supposed to be brave and march optimistically through treatment.
When facing the worst possible medical news, the person who confronts it without complaints appears to deserve a medal. While there is such a thing as sharing too much information, stoic endurance during treatment may actually be doing you and your loved ones a disservice. Consider some of the problems.
Your doctor doesn’t learn a true picture of your health status. It is common in support groups I belong to for someone to write in with a message along these lines, “I’ve been vomiting all night after every treatment, and recently I’ve started having these blinding headaches, but I don’t want to bother the doctor. Does anyone have any suggestions?” Further conversation with this poor soul may reveal that she was in the doctor’s office just yesterday, smiling and reassuring him or her that everything was going just fine with treatment.
Sometimes the smiling patient gets unintended approval from the doctor for not complaining. In a perfect world, the doctors and nurses would ask probing questions designed to find out about problems. But when they don’t, complaining about symptoms is not the same thing as whining. It is sharing vital information. Your doctor may be able to adjust the dosage or timing of medications to make you more comfortable or suggest tips to reduce nausea. Those blinding headaches might indicate that the cancer has spread. Ignoring them is not bravery but foolishness.
Your friends and family don’t learn information that could be important to their own health. You don’t need to show off your mastectomy scar to use your illness as a chance to educate people about cancer symptoms. Were there important clues to your health that you overlooked before your diagnosis? Can you share that information with others in ways that will enlighten rather than frighten?
The people who depend on you don’t understand your current limitations. Before your cancer, people knew what you could and could not do. If you are afraid of heights, they learned not to ask you to hang the dance decorations from the ceiling. Now that you are in cancer treatment, you probably don’t want to disappoint your family and coworkers. You want to be strong and do everything you did before.
If you don’t speak up, you may find yourself scheduled to cook all day at the church spaghetti dinner the day after chemo. It can be hard to tell people who rely on you that for a while, you will have limitations with your family or work responsibilities. If you don’t tell them, they may be even more disappointed when you don’t do your usual stellar job or have to cancel at the last minute.
You lose an opportunity for true intimacy with the people you love the most. Of course, you won’t share every painful detail with your little children or elderly parents. However, if you never tell them you are afraid, they may be reluctant to share their fears with you.
Every marriage has its own set of unspoken rules. If your marriage has been governed by the idea that it’s wrong to whine, it might be time to establish some new rules. Would you want your spouse to grin and bear it on days when the pain is intense? Wouldn’t you want to know that it’s pain from a surgical incision that’s distracting him from listening to you rather than lack of interest? Constant complaining can wear any spouse down, but smiling through fear and pain denies your partner the chance to hold you, rub your back, and cry with you. In a truly intimate relationship, partners need to share highs and lows honestly.
Of course, there is a balance to sharing. Telling a newly diagnosed breast cancer patient about the worst part of your treatment is not helpful. At a wedding, you won’t want to ruin the happy couple’s day by describing your radiation burns. But at the right time and place, you need to be honest about your experience, the ups and the downs. Ignore that unspoken rule that says the best cancer patient is the smiling cancer patient. Be real!
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Phyllis Johnson is an inflammatory breast cancer (IBC) survivor diagnosed in 1998. She has written about cancer for HealthCentral since 2007. She serves on the Board of Directors for the Inflammatory Breast Cancer Research Foundation, the oldest 501(3)© organization focused on research for IBC. She is a list monitor for an online support group at www.ibcsupport.org. Phyllis attends conferences such as the National Breast Cancer Coalition’s Project LEAD® Institute. She tweets at @mrsphjohnson.