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How do I keep people updated as to what’s going on with me?
• Social-networking Web sites specializing in medical updates—such as CarePages.com and Trusera.com—let users construct a page and post news about their treatment. CarePages.com lets you set who can visit your page, allows visitors to request e-mail alerts when your page is updated, and publishes support tips. Trusera.com focuses on exchanging stories and asking questions of others with the same disease, but it can be used like CarePages to give updates to loved ones. PatientsLikeMe.com connects patients suffering from specific illnesses such as ALS with communities to share tips and experiences.
How should I tell my children about my diagnosis?
• Telling kids about illness is tough, but not telling them has the potential to be worse. “A lot of people, because they don’t know how to do it, then they just don’t do it,” says Christine Hazelett, who coordinates programs for children, teens, and families at Gilda’s Club Chicago. “You just need to tell them. It doesn’t really matter how you tell them, as long as you tell them.” Magical thinking—that is, believing in causation where none exists—leads young children to draw terrible conclusions from the worry they pick up on. “Children know that there’s something going on,” says Tobin, the psychiatrist. “Their imagination can cook up something much worse.”
What you should say depends on the age of the child. Older kids can understand more about the human body. Younger kids don’t need as much detail. Tell them what will change about day-to-day life at home. Reassure them as well as you can while being honest.
More important than what you say is how you say it. “It needs to be authentic. It needs to be in your language, your words, how you normally talk to your kids. It’s OK to be tearful, it’s OK to be emotive, because they’re going to have that, too, and they need to know that’s OK,” Hazelett recommends.
Even before they ask, reassure young children that they didn’t cause your illness. Kids can draw this conclusion. Also, if the disease is not contagious, emphasize that no one else in the family is going to catch it.
What records should I keep?
• If you are keeping a folder or notebook that you take to appointments, it’s useful to have records that can answer questions a doctor might have for you. For example, the pathology report that led to your diagnosis can be useful to a doctor you are consulting for a second opinion. If you have had surgery, copies of the operative report are worth keeping. Scans, x-rays, hospitalization reports, and a summary of your treatment plan can also come in handy. Many doctors suggest you make a list of medications you are taking: the names, purposes, and frequency with which you take them. Doctors often hear stories about patients who aren’t taking their medications properly. It’s easier to stick with the plan if you write it down. Also, patients often forget names or dosages. Take either your list or the pill bottles with you to the doctor’s office.
What should I know about my insurance coverage and how should I find out?
• “First of all,” says Cindy Parker, the director of managed care at Northwestern Memorial Hospital, “[patients] should understand what their benefits include.” And that means understanding the manual explaining your benefits, “which nobody ever looks at,” she says. If you don’t know where this document is, call the toll-free number on your insurance card or ask your employer’s human resources department. Many benefit manuals are available online as well.
When you are puzzling through your coverage, remember that doctors and hospitals are considered separately. That is, the hospital where you are being treated may be in the network, but your doctor may not be. Ask about each. If you are likely to be hospitalized for treatment, ask how to preauthorize that stay. Ask about MRIs, CT scans, and other tests. You can plan ahead if you understand your coverage. “The worst thing that happens with patients is they think they’re covered when they’re not,” Parker says.
Exclusions don’t always seem logical to the casual observer, so be specific. “It’s weird stuff,” Parker says, “like a hip replacement with a steel joint as opposed to a ceramic joint was covered.” Even if the treatment your doctor recommended isn’t covered, it could turn out that an equally promising treatment may be.
“It’s really important to have a doctor that’s going to be in your corner,” says Susan Loeb, a benefits advocate and claims assistance professional. The doctor and his or her office can support an appeal of a decision the insurance company makes that doesn’t accord with the treatment you’ve settled on.
illustrations: Harry Campbell