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Tips and resources for managing lupus, fatigue, and memory problems.

 
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WebMD Expert Discussion: How to Take Charge of Your Medical Care

You've just been diagnosed with lupus. What do you do now? How will you remember everything the doctors are telling you? Where can you turn for advice?

Lupus patient and activist Christine Miserandino has been there. She knows how overwhelming and confusing it can be. In the WebMD Lupus Community, Miserandino offers five tips for moving forward after your diagnosis:

  • Get a second opinion. It's better to be certain about your diagnosis before you start treatment, Miserandino says.  
  • Bring a friend or family member to appointments. This is especially important in the beginning. It will probably be difficult to take in all the information you'll be getting. A supportive person can take notes, ask questions, hold your hand, make you laugh, and just be there.
  • Start a notebook or folder for notes, records, and test results. You'll want all your health records together and handy when you see different doctors and deal with your insurance company. Organizing records as you go will save you from having to hunt them down later. Read your test results, and if you have questions, ask your doctor.
  • Do your research. The more you learn about lupus, the more in control you'll feel, Miserando says. Knowledge will also empower you in conversations with your health care providers. Start with the many articles, posts, and videos about lupus on WebMD.
  • Ask questions! Don't be afraid to ask questions or talk about changes in how you feel. Be a partner in your health care.

Members of the community also offered some helpful advice for new lupus patients:

  • Don't believe that everything you read will happen to you.
  • It's normal to mourn for your past way of life. But the sooner you can carve out a new life, the happier you'll be.
  • You can still do things you love if you save energy and time for them. It's OK to say "no" to avoid over-committing yourself.
  • It's also OK to ask for help -- especially when someone offers it. On days when you feel good, you can return the favor.
  • Don't feel that you have to comfort everyone else about your diagnosis.

What tips would you give someone who was recently diagnosed with lupus?

Discussion led by Christine Miserandino Guest Expert
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Christine Miserandino is a lupus advocate who writes, blogs, and speaks about living with lupus.

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