Nearly one in five Americans has a disability, and 45 percent have a chronic illness. Sharon Waldrop, vice president of education at the National Fibromyalgia & Chronic Pain Association, and Toni Bernhard, JD, author of How to Be Sick, discuss what people with chronic illness wish their physicians understood.
1. We want you to believe us
Waldrop has heard from countless patients who encountered doctors who told them their illness was psychological when, in fact, they were eventually diagnosed with an organic disease. Many patients with chronic illness have likely had unpleasant experiences with physicians, so they may be wary or defensive. As an antidote, Waldrop encourages physicians to believe what the patient tells them. “That would go a long way to creating a better doctor-patient relationship,” she says.
2. How we look isn’t necessarily how we feel
Physicians, like everyone else, can be misled by the fact that many patients with chronic conditions look healthy, even when they feel intensely ill, Bernhard says. If patients look fine but feel sick, the doctor might tell them, “Gee, you look really good, whatever we’re doing must be helping,” Waldrop says. “If the patient looks ill, the doctor may say, ‘You’re not taking care of yourself,’” both of which may be unhelpful responses.
3. Chronic illness affects every aspect of our lives
Many physicians may not understand the extent of disruption or sense of grief that often accompanies chronic illness. Being unable to perform chores, partake in hobbies, socialize, work, and participate in other daily activities can create incredible psychological stress and a devastating sense of loss, according to Waldrop and Bernhard.
4. Many of us lack social and family support
“People write to me all the time saying, ‘I don’t have a partner, I don’t have friends, I don’t have family nearby,’” Bernhard says. Lack of support is not only devastating but can also affect a patient’s ability to adhere to treatment plans. “Getting to a specialist or getting lab work done can be a real challenge,” she explains. In addition, divorce rates when one partner has a chronic illness can be as high as 75 percent, Waldrop says. The loss of a partner can contribute profoundly to psychological stress.
5. We may not have the financial resources to follow through with treatments
“We know chronic illness is a gateway to poverty,” Waldrop says. However, many physicians may not consider financial cost when designing treatment plans. Furthermore, having health insurance, including Medicaid or Medicare, may still not make recommended treatments affordable.
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