Understanding Lupus Self-Care Needs

It’s morning. You are opening your eyes and they feel like you are trying to lift concrete slabs. You try to get up, and it seems like your joints have aged decades overnight. And you can even remember your name due to that thick brain fog. Sounds familiar? Yeah, I know. It’s the glorious morning of every lupus warrior, right? Not really.

Today, I want to talk about something that's changed my life with lupus. Some effective, mindful self-care practices that are quite beneficial if you are trying (or struggling) to manage your lupus.

Living with lupus has its own challenges that sometimes need some specially crafted self-care approaches. According to a 2022 study, there are over 3.41 million people affected by SLE (systemic lupus erythematosus) worldwide. Many of them have daily struggles trying to find what works for them in order to manage their lupus symptoms daily beyond medication.

When Self-Care Becomes Survival with an Autoimmune Disease

Before I was diagnosed with lupus, I used to think that self-care is just some bubble baths, scented candles, and sauna time. Don't get me wrong, those things are awesome! But by living with lupus I learned that self-care for someone with an autoimmune disease goes much deeper. It means you need to listen to your body when it whispers to you so it doesn't have to scream.

At the beginning of my diagnosis, I ignored the whispers. I was pushing through fatigue and joint stiffness to meet work deadlines and sacrificed sleep to keep up with “normal life”. And what was the result? Lupus flares so severe I couldn't get out of bed for days.

Those flares were my greatest teacher about how important is to be mindful of lupus management.

Essential Mindful Practices for Lupus Management

The Daily Body Scan Ritual for Lupus Symptoms

Every morning now, before I even reach for my phone, I take five minutes to simply lie still and scan my body from head to toe. I’m making notes of which joints feel tender, which muscles are tight, and checking for signs of brain fog rising.

This mindfulness practice helps me plan my day realistically. If I notice particular pain in my hands, then typing is not on my daily to-do list. If there is fatigue settling in my chest, I might call and reschedule that coffee date.

By scanning your body, you are acknowledging where you are today (without judgment). Some days, I smile through tears as I’m soothing my rebellious immune system, "I see you, I hear you, and we're going to work together today."

There is a research published in the Journal of Behavioral Medicine suggesting that mindfulness practices like body scanning can contribute to reducing the pain intensity and improve quality of life for people with chronic autoimmune conditions like lupus.

Energy Budgeting for Chronic Illness Management

Remember the spoon theory? That one made a 360-degree change in how I see my daily energy (thank you, Christine!). So now, each morning after my body scan, I make a mental allocation of my "spoons" for the day.

I have a daily planner where I write down my three non-negotiable tasks for the day. Just three. On good days, I might accomplish more, but having those three most important tasks helps me focus my limited energy on what really matters when you also try to manage your lupus.

So, yesterday, my three MITs were:

- Write one page of my next book chapter

- Chat with my mother

- Prepare a healthy and yummy lupus-friendly lunch

I didn't manage to fold the laundry or respond to all my emails, but that's okay. Having the freedom from intentionally choosing what deserves your limited energy is unexpectedly powerful for chronic illness management.

Related post: The Spoon Theory Guide to Writing: Managing Your Creative Energy - Part 1

Gentle Movement Strategies for Lupus Pain Relief

Exercise and lupus have a complicated relationship, don't they? On one hand, movement can help you with the joint mobility and the mood. And, on the other hand, too much moving can trigger lupus flares and increase inflammation. Awesome, right?

I've found my sweet spot in what I call “movement bites”. Small gentle movements throughout the day that are “aware” of the lupus joint pain. Sometimes, it can be just stretching my arms above my head and taking three deep breaths. Other times, it's a five-minute gentle yoga session or a slow walk around my neighborhood.

The key is to be aware of how your body responds to different types of movement. Yesterday, my usual gentle yoga felt too demanding, so I simply sat in a comfortable position and rotated my wrists and ankles while breathing deeply. Those are my favorite small movements with big benefits for managing lupus symptoms.

A study in the Journal of Rheumatology found that consistent, gentle movement broken into short sessions throughout the day can reduce inflammatory markers in lupus patients more effectively than single, longer exercise sessions.

Creating a Rest Sanctuary for Lupus Flares

Rest isn't just about sleep (though good sleep hygiene is a must for lupus warriors!). It's about creating blocks of complete peace throughout your day.

I've created a corner of my bedroom as my "lupus rest sanctuary”. It has my softest blanket, a supportive pillow, noise-canceling headphones, and an eye mask. When fatigue waves hit or pain intensifies, I retreat there for 20 minutes of complete sensory rest - no phone, no Kindle, no stimulation.

At first, this practice was difficult. I felt guilty and unproductive. (There was so much I needed to do!) But I've learned that these rest periods actually extend my productive hours and prevent major lupus flares when taken consistently.

Compassionate Self-Talk for Chronic Illness Acceptance

The hardest mindfulness practice of all? Changing how I speak to myself while living with lupus. Chronic autoimmune disease can trigger a brutal internal dialogue:

"Why can't you just push through like everyone else?"

"You're letting everyone down again."

"You're using your illness as an excuse."

Sound familiar, lupus warriors?

I now wear a ring with a rotating element on my right hand, and whenever I catch myself in this negative spiral, I start rotating the ring and replace the thought with something my wisest, most compassionate self would say:

"Your body is fighting a complex autoimmune battle. Rest is productive."

"Setting boundaries isn't letting people down; it's teaching them about your lupus reality."

"Honoring your limits today means more strength tomorrow."

Research from the field of psychoneuroimmunology suggests that negative self-talk can increase inflammatory markers in autoimmune conditions like lupus. So, that means that making compassionate self-talk is not just emotionally beneficial, it’s also physiologically important.

The Broader Impact of Being Mindful of Lupus Management

The beautiful thing about these mindful practices is how they ripple outward. When I honor my body's needs without shame, I model this self-compassion for others in the chronic illness community. When I set clear boundaries, I educate the people around me about invisible illnesses like lupus.

My relationships have actually deepened since implementing these self-care strategies. Yes, I say ‘no’ more often, but the ‘yeses’ I give are more meaningful because they come from a place of true capability rather than obligation.

This approach to mindful living with lupus, besides improving my symptom management, has also improved my overall quality of life, something the American College of Rheumatology recognizes as a critical component of comprehensive lupus care.

Actionable Steps for Implementing Mindful Self-Care with Lupus

If you're feeling overwhelmed (and what lupus warrior isn't sometimes?), start with just one small mindfulness practice. Maybe begin with the body scan tomorrow morning, or set three realistic priorities for your day.

Have in mind that mindfulness for lupus management isn't about adding one more thing to your to-do list. It's about bringing a gentle awareness to what you're already experiencing and making choices from that place of awareness.

For a structured approach to implementing these practices, download my 7-Day Lupus Mindfulness Starter Plan designed specifically for those new to mindful self-care with autoimmune disease.

Key Takeaways for Lupus Warriors

• Body scanning helps identify lupus symptoms early and plan your day accordingly

• Energy budgeting with the spoon theory prevents overexertion and reduces flare risk

• Gentle “movement bites” provide pain relief without triggering inflammation

• Creating a “lupus rest sanctuary” makes preventative rest a priority in lupus management

• Compassionate self-talk reduces stress and may help lower inflammation

Until next time, be as gentle with yourself as you would be with someone you dearly love.

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Are these mindful self-care practices for lupus warriors helpful? Please share this post with other lupus warriors who might benefit! And don't forget to subscribe to my newsletter for more strategies, personal stories, and lupus warrior support.