|
Media Releases
"Invisible Disease" Needs "Visible" Understanding and Support
Columbia, Mo. (Mar. 21, 2006) - There is nothing worse than feeling really sick, but not getting the support of those around you just because you don't look sick. No one understands your pain and discomfort. Many Americans face that same challenge on a daily basis in coping with some "invisible diseases," feeling very unwell yet looking perfectly healthy.
Fibromyalgia (FM) is a chronic illness that fits this category. Characterized by widespread pain in muscles, joints and tendons; profound fatigue, weakness, sleep disorders, depression and anxiety, fibromyalgia can be quite agonizing. Sometimes, the burning pain in the legs and arms is so intense that one can't even put clothes on. And a simple test of blood pressure can squeeze painful screams out of a person in the middle of a flare.
To compound the pain and fatigue that affect an estimated three to six million people in the U.S., fibromyalgia is also a disease other people cannot see or readily understand. "Due to lack of physical signs, fibro is not easily recognizable to the general public and is often called an 'invisible disease'," says Deanna Davenport, a nurse practitioner at the University of Missouri-Columbia Center for Rheumatic Diseases, who has extensive experience in helping FM patients.
In various online fibro support groups, many have lamented the frustration of having excruciating pain that usually goes unnoticed or is misunderstood. Friends gradually disappear, because you've missed too many parties for a problem they can't see; others speculate that you are just making up a disease to gain sympathy and escape duty. Even your loved ones' understanding can wane when you once again cancel an activity at the last minute because of a sudden flare-up.
Since there is no known cause or cure for fibromyalgia, self-management is essential. But beyond one's own effort, understanding and support from the family could make a huge difference in one's physical and psychological well-being.
"It is a very individual response in each patient as to whether they want others to know they have fibro or they don't, but I feel it is crucial for the family to know what's going on," says Davenport, who usually provides teaching materials to each patient to share with their families. "In order to adapt to having chronic pain, and the limitations it places on your life, you need to have a support system in place. This means people who understand that there's going to be days when you can't do everything you've planned, when you will need more help, and that they may have some responsibility in giving this help. "
The support of family and friends can take many forms. Since the symptoms of fibromyalgia are hard to discern, the rule of thumb is to see through the surface and take the initiative. If you touch the person and they flinch, it's a pretty good indication this is a bad day. If the family has recently done something that takes more energy or physical activity than usual, such as traveling, moving, or some job around the house, assume the person with FM isn't going to feel real well for several days. If he/she looks stiff or tired but still tries to carry things on, perhaps you'll need to push past their "No, I'm fine" reply to ask a bit more firmly whether help is needed. In families with children, it's helpful to give kids some minor tasks on a regular basis to help with the parent's workload. And always be prepared for last-minute change. Remember: just because he/she can do a thing one day doesn't mean he/she will be able to do the same thing the next day.
The Missouri Arthritis Research Rehabilitation and Training Center (MARRTC) was established in 1971 at the University of Missouri-Columbia Arthritis Center. MARRTC is funded by the U.S. Department of Education's National Institute on Disability and Rehabilitation Research (H133B031120) and is the only federally funded arthritis rehabilitation research and training center in the country.
As part of the MU Health Communication Research Center (HCRC), MARRTC's mission is to become a national leader in the areas of disability management and communication, improve the quality of life and promote independent living among people who have arthritis and arthritic conditions. MARRTC's core message is "Disability is everyone's issue."
|
|
