|INT'AL CLASS'N OF DISEASES | AIDS GLOSSARY | ANATOMY | DRUGS | USA STATS | CHINA STATS | GENOME DICTIONARY|
LUPUS ERYTHROMATOSUS A TO Z
SOURCE: National Institutes of Health, U.S.Department of Health and Human Services: Link to NIH
Living with Lupus: Key Issues
Every day, the patient living with
lupus confronts a range of issues, from
the emotional reactions of a spouse,
children, or work colleagues to her
or his own fluctuating physical and
psychological state. The thoughtful and
sympathetic health professional can
contribute greatly by helping the patient
see these issues objectively, understand
that they will come and go over time,
and develop effective coping skills.
The Patient's Own Physical and Emotional StateThe physical repercussions of lupus, such as fatigue, weight gain, or an increased sensitivity to sunlight, can trigger intense emotional reactions.
The following sentiments illustrate some common physical and emotional experiences of people with lupus:
"Nobody understands how it feels to be this tired."
"I feel like I'm trying to move through molasses. Even my bone marrow feels tired."
"No matter what I do or how much sleep I get, I still wake up tired."
"Between pain, stiffness, and fatigue, I feel like an old, old person."
"Why do I look so awful? I don't even look like myself."
"I don't want anyone to see the rash on my face."
"I used to have beautiful thick hair."
"I hate the fact that I eat so much, but this medicine makes me hungry all the time. I keep gaining weight."
Physical and Mental Abilities
"I've always loved sitting out in the sun. Now I can't anymore."
"I can't do the outdoor recreational things I used to do. I feel I'm letting my family down by not being able to play outdoors with them."
"Does anyone else have memory lapses? I'm afraid something terrible may happen because I'll forget something really important."
"I'm always on the verge of tears."
"I don't want to leave the house."
"I can never make plans, because I don't know what tomorrow will bring."
"Sometimes I think my family and friends would be better off without me.
"I've taken too much sick leave at work."
"Should I tell my boss I have lupus? I'm afraid I'll lose my job, and we really need the money."
"Will I pass the disease on to my children?"
"What will happen as I grow older? Am I going to die from this disease?"
Source: National Institutes of Health, U.S.Dept of Health and Human Services