Patient Blogs | Lupus
How I Keep Track of My Lupus Symptoms
photo of woman taking notes in her diary

Managing and keeping track of all of your symptoms, medications, and doctors can be extremely overwhelming. It can be hard to remember everything you want to discuss with your doctor or to notice trends or changes in your health. I’ve learned that it’s very helpful to use a tracking app, a journal, or a running note to organize my medical information.

When I’m experiencing a new symptom, I’ll often use a symptom tracker app on my phone. It makes it easy to track when you’re experiencing it, how long it lasts, and its severity. These apps make it easy to see if there are any trends and if your symptoms coincide with medication, food, sleep, etc., because you can track those as well. These apps even create graphs and charts that you can print out and take to your doctor. I don’t use these all the time, but when I’m in a situation where I’m trying to understand something new in my body, they can be extremely helpful.

When I’m not using an app, I always have a running note in my phone where I keep all the information I need for my upcoming doctor’s appointments. I write down any new symptoms or change, as well as medication refills or questions I have. I try to update it as soon as things pop up so I don’t forget anything I may want to discuss with them. I never delete these notes so that I can go back and look at dates and remember the details of symptoms. It’s hard to remember when certain symptoms started, so having all of this information in one place is great.

I keep a flare journal, but more focused on the emotional impacts of the flare rather than the symptoms. I get so disappointed and upset when I’m in a flare, and I’ve found journaling about it to be very therapeutic. It can be a lot of work holding in that emotional weight, so giving myself space every time to write about it is a great release. Processing some of those emotions -- fear, anger, sadness -- allows me to relax some and focus on taking care of the rest of my body.

There are so many ways to keep track of your symptoms and flares, so I suggest trying a few different methods and finding what works best for you! This should be something that truly helps you and doesn’t make an overwhelming situation more overwhelming. I’ve found that though it takes some extra time, organization and planning really make things easier in the long run. I’m not perfect at it, there will be days or periods when I’m not as good at taking notes about my condition, but whenever I do, it makes a world of difference!

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Photo Credit: Johner Images via Getty Images

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Erica Lupinacci

Erica Lupinacci

Diagnosed since 2009

Erica Lupinacci was diagnosed with systemic lupus erythematosus in 2009. She is the co-founder of Suffering the Silence, a 501(c)(3) nonprofit dedicated to leveraging the power of art, media, and storytelling to raise awareness and break the stigma surrounding chronic illnesses and disability. Lupinacci has spoken about life with chronic illness for the Yale School of Nursing, Weill Cornell Medical College, Awesomeness TV, The Mighty, and more. She is an actor and producer living in Los Angeles and most recently co-created & produced Trust Me, I’m Sick, a short docuseries about life with chronic illness. Learn more about her work on her website.

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