Asking for help has been one of the biggest adjustments of having a chronic illness for me. It’s in my nature to do it all, and I’m much more comfortable taking care of others than having them take care of me.
A recent survey of people with lupus and their supporters makes it clear that I’m not alone. According to the survey:
87% of the patients surveyed said they downplayed symptoms to avoid upsetting their families, and 52% minimized them when talking to their physicians.
68% of patients said their illness affects virtually every relationship they have; 74% of supporters said the same.
78% of supporters described themselves as “very supportive,” but only half of the patients agreed. Only 34% of doctors felt their patients received a great deal of support at home.
I feel pretty lucky to have a husband who steps in when I ask him to take over some extra household responsibilities, and I have a few friends and family members who know a little bit about my illnesses. Generally, though, I’m like most of the patients in the survey. I’m actually probably better at discussing autoimmune disease with people I don’t know, maybe because I am focusing more on advocacy than on relationships when the topic comes up.
What do you think about the survey results? Do they reflect your experiences?