I’m creating a personal curriculum specifically tailored to life with lupus

Living with lupus is such an individual, personal experience, something I have written about frequently. I assume the same applies to many other chronic conditions as well. Yet we share many things in common, too — the chaos, fear, labs, medicines, limitations, loneliness, altered friendships, bruises, falls, loss of abilities, shifting mobility, paralyzing pain, and the list goes on. None of this is unique to a single disease.

Obtaining individualized medical care is also an ongoing challenge, despite the advances in information and precision medicine.

But what do we do with all of the lessons we learn along the way? For many patients, the first step is to start a journal. We grab a handy-dandy notebook or open a digital notes app to track our symptoms, remedies, test results, concerns, and questions.

Some tools that help me are the free, printable “Tactical Guide for Lupus Thrivers” and the digital resource Thrive Well with Lupus. I’ve tried other strategies as well, including bullet journaling, Google calendars, and symptom trackers. This year, I’ve joined the current trend of creating a personal curriculum. (Now, don’t get all academician on me. This is not that kind of curriculum.)

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What is a personal curriculum?

A personal curriculum is a self-directed learning plan focused on personal interests and growth, not grades. It’s about following your curiosity with intention, much like how you studied (or should have) in school. Online, you can find people choosing personal curricula that are detailed with syllabi, quizzes, and projects.

If, like me, you have lupus and are considering composing a personal curriculum, I would suggest being intentional about it, but not overly intense. Life with lupus is chaotic enough. Let your curiosities guide you to a “semester” of personal exploration. 

After searching the internet for suggestions on how to begin, I found some common steps and created my personal curriculum, which I’ll share below:

Step one: Select themes to study. Choose 3–5 topics or categories that genuinely excite you. The list you create will become the classes for the semester. Note-taking, deep-diving, and reflection are recommended. My classes are:

• Anti-inflammatory meal preparation
• Body-mind connection through vagus nerve stimulation, spiritual meditation, tai chi, Warrior Walking, and lymph self-massages 
• CAR T-cell therapy and clinical trials 
• Digital detox methods
• Game mastery: Spades, poker, Bid Whist, Word Scramble, or Dungeons and Dragons
• Junk journaling or commonplace journaling

Step two: Gather resources and curate books, articles, online courses, and documentaries centered on the categories. These are the “teachers” for the semester. This list can and will grow:

• “The Biology of Belief: Unleashing the Power of Consciousness, Matter and Miracles” by Bruce Lipton; “The Body Teaches the Soul: Ten Essential Habits to Form a Healthy and Holy Life” by Justin Whitmel Earley; and “Starving the Wolf: A Victory Over Lupus” by Karen Quiros
• Steven Barnes’ Warrior Walk videos
• Anti-inflammatory cooking videos: “The Nard Dog Cooks” by Andrew Bernard and “The Doctor’s Kitchen” by Rupy Aujla
• Scientists at the University of Pennsylvania, Lupus Foundation of America, Lupus Research Alliance, and ClinicalTrials.gov

Step three: Set goals and define what success looks like: 

• Finish a set of journals
• Participate in a game tournament 
• Cook seven delicious meals
• Remove digital distractions and uninstall nonessential apps
• Discuss CAR T-cell therapy with specialists

Create a schedule: Set a sustainable routine for being in “class” and enjoying your curiosities. It can be an hour a day, twice a day, for example.

Review: What are you learning? Are you engaged or bored? What new habits do you have? What do you want more of?

The concept of a personal curriculum is new to me, and I am interested in learning more this semester. Will you join me? With a personal curriculum, your curiosities can lead you to discover, or rediscover, personal strengths — and that’s worth celebrating. 

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.