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Patient Stories

A family photo of a lupus patient

Hear from those with lived experience of lupus:

People with lupus talk about the many ways their symptoms affect their day-to-day life.

person experiencing neck pain
“It can be taxing mentally if you’re in that amount of pain and you can’t move. My God, I’m [in my 30s]. I need to be out enjoying my life, but I can’t.”
person looking worried

You can learn more about the mental and physical effects of lupus by visiting ConquerLupus - Symptoms.

People with lupus talk about facing challenges when seeking care, including skepticism and racism.

Two people holding hands
“If you go into the hospital, everybody thinks your drug-seeking… It’s just like a stigma and then they talk down to you sometimes. To be honest with you, there is a lot of racism involved.”
person sitting on a couch experiencing pain
“I think it was a lack on the health care system. A lot of times I feel like when I would go in and say that I had this pain or something, that they wouldn't believe me, or they would think that I was exaggerating the issues that I would have.”

People with lupus have tried a range of self-care techniques to manage their symptoms.

person smiling
“I wasn’t a super vegetable person, but I added lots of fruits and vegetables into what I eat… I’m more of a salad person now with some type of fish or chicken on top of it.”
person drinking a beverage
“Listen to your body. It can be hard to understand what’s going on with yourself. That’s really beneficial, just listening to what your body needs.”

You can learn about these self-care techniques and more by visiting ConquerLupus - Self Care.

When seeking clinical care for your lupus symptoms, health care providers have a few recommendations:

  • As a first step, seek care through your care team including your rheumatologist and primary care doctor.
  • Expect health care providers to ask about your medical history and run diagnostic tests, which may include blood work, as they work to identify and treat your lupus symptoms.

You can learn more by visiting ConquerLupus - Talking to Your Doctor

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