People who are living with this complex condition wish that doctors kept these aspects of diagnosis, treatment, and management in mind
ecause lupus can come with so many variables and a high degree of complexity, many people get frustrated in their journeys toward managing the disease. Here, 11 patients opened up about what they wish doctors knew when it comes to the nuances of lupus, and how to better care for those with the disease.According to the Lupus Foundation of America , the disease is difficult to diagnose because symptoms can be so different from person to person.
“This is a time-consuming disease, and it sucks the energy out of you to manage it,” she says. “Sometimes, doctors act like you only have one appointment [every so often], and that’s simply not true. They seem to forget we never get a day off.”. For example, she was prescribed an IV drug that’s administered four times per year and costs $18,000 per infusion. That’s led to hours on the phone with the insurance company to ensure it’s covered.
Because of that, Burton wishes doctors would be more proactive in pointing patients toward resources, and especially toward support groups of other lupus patients who can offer guidance through those tough early months. “As someone who’s had kidney failure and had to do chemo as a result of this condition, I’ve learned firsthand how transformative and healing it can be to balance medical treatment with exercise and healthy eating,” he says. “It’s about getting the body to a place where it can weather the storm of lupus. I feel like that’s not talked about enough, to define what ‘healthy’ can look like for each person.
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