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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?