Why Is a Lupus Diary Important?

No matter how you feel about diaries and journals, when you have an unpredictable autoimmune disease like Lupus, it’s vitally important to keep track of how the disease impacts your life.

A May 2015 survey of Lupus doctors and their patients revealed a huge gap in how doctors perceive the impacts of the illness.* Doctors participating in the survey reported believing that their Lupus patients only experienced symptoms a few times per month; whereas, the Lupus patients participating in the survey reported experiencing symptoms daily.

That’s shocking, right? How could there possibly be such a gap between our experience and the doctor’s perception? Either they’re not listening or we’re not giving them enough information. Giving them the information about how Lupus affects us isn’t easy unless we systematically keep track of our lives and symptoms. Keeping a diary is one way to do that.

Since it’s so important, why aren’t all Lupus patients keeping a diary?

The problem with regular diaries has been that recording and tracking your health isn’t always easy to manage, especially when you don’t feel well. Specifically, the problems with keeping a health diary include:

  • Not sure of what to say, or what’s important enough to say.
  • Not easy enough to keep up with on a daily basis.
  • Not available on multiple platforms.
  • Too time-consuming.
  • No way to organize your information with more than just blank sheets with lines.
A New Format to Help

This Lupus Diary format, which I originally created for myself, really helps me overcome the problem of the blank page and has now become an easier way to help me remember all that happens to me between doctor appointments.

I organized it for tracking my health using prompts that guide you to make diary entries without worrying about what to write on a blank page, such as:

  • Separate sections for body, mind, and spirit—to help you monitor your health holistically.
  • Checklists for tracking your progress with the specific habits and rituals listed in the Live a Beautiful Life with Lupus framework—a reminder to take action to take care of yourself.
  • A “Meals” section to monitor how your diet may be affecting your health.
  • And more….

Maybe you will find the Lupus Diary book helpful to you.o

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