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WebMD Expert Discussion: Coming to Terms With a Lupus Diagnosis

Lupus doesn't just change your health. It changes your life. People have different ways of responding to a lupus diagnosis, but one thing is true for everyone: It's not easy.

As a person with lupus, as well as a lupus activist, Christine Miserandino understands this firsthand. In the WebMD Lupus Community, she says that although people tell her they admire the way she's come to terms with the disease, she's not sure that she has actually come to terms with it. Some days she still wants to scream out of frustration.

Anger, sadness, depression, denial, and grief over the loss of the life you once lived are normal, Miserandino says. For her, acceptance comes little by little, and by making a conscious choice every day to live life the best she can. This has helped her live life in new ways, although it's not always easy.

Members of the community talked about their own ways of dealing with their diagnoses. Some who are struggling with accepting the disease said they felt relieved that Miserandino gave a voice to their feelings. Yet, one woman said she won't give in to the "sentence" of living a different lifestyle with lupus. Another woman, who has had lupus for 27 years, said that her lupus symptoms seem to improve when she's "in denial" about her limitations.

One woman said she is grieving, not just for her past, but for her future. The hardest part of having lupus, she said, was discovering that she can't tolerate sun, heat, and humidity. She feels that she won't be able to enjoy the outdoors in summer with her children.

Many people could relate to this. They suggested she try shirts that block UV rays, wide-brimmed hats, or going to amusement and water parks in spring, before the weather gets too hot. Many people said that talking about lupus in a community space like WebMD's can also help you work through the tough times, and not feel so alone.

Have you worked through your lupus diagnosis or are you still struggling with it?

Discussion led by Christine Miserandino Guest Expert
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Guest Expert What is a guest expert?

Christine Miserandino is a lupus advocate who writes, blogs, and speaks about living with lupus.

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Christine Miserandino Lupus advocate Christine Miserandino offers tips, advice, and coping strategies for living with lupus.
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