An Indie Author's Guide to Writing with Lupus

Living with lupus and being an indie author, I've learned that brain fog isn't just an occasional inconvenience. It’s a constant follower that I need to learn to work with, not against. When you're managing an autoimmune condition, the typical advice to "push through" or "drink more coffee" is not helpful. Sometimes it can be dangerous. This is how I've learned to keep my writing career alive while listening and respecting my body's needs.

Learning About Brain Fog with Lupus

Brain fog with lupus is different from regular writer's block or tiredness. It's a medical symptom that can make you feel like someone has stuffed your head with cotton and replaced your thoughts with static. It often comes along with flares, can be triggered by stress or overexertion, and might last for hours or days. The first step to managing it is acknowledging that this is part of our reality as writers with autoimmune conditions. It’s not a personal failure.

Working With Your Body, Not Against It

Respect Your Energy Cycles

Living with lupus means our energy comes in waves (or energy spoons). So, the best thing to work with these energy waves is to:

• Track your daily and weekly patterns to identify your best writing windows

• Keep a symptom diary along with your writing schedule

• Plan your most important writing tasks during your typically better hours

• Accept that some days will be more productive than others (and that’s completely okay!)

Create a Kind Writing Practice

Forget the advice about writing every day. Instead, try these:

• Set flexible weekly goals rather than daily ones

• Include rest days between writing sessions

• Have multiple projects at different stages for varying energy levels

• Keep a 'low spoons' writing task list for tough days

Practical Strategies for Flare Days

Adapt Your Writing Methods

When typing hurts or screens cause fatigue, these can be lifesavers:

• Use voice-to-text software (Google Docs Voice Typing has been a lifesaver! It's a great option if you're already using Google Docs for your writing.)

• Try dictating into your phone while lying down

• Use blue light filters on all devices

• Consider switching to paper for first drafts

• Use text-to-speech to review your work when reading is difficult (this also gives you a different perspective for reviewing your work)

Create a Flare-Friendly Workspace

Your writing space needs to accommodate both good and bad days:

• Keep multiple comfortable writing positions available (desk, recliner, bed desk)

• Have heating pads and comfort items within reach

• Store pain management tools nearby

• Use ergonomic tools like wrist supports and screen stands

Managing Your Writing Career

Realistic Project Planning

With autoimmune conditions, we need to be strategic. These are a must-have:

• Include buffer time for flares when setting deadlines

• Consider shorter works or serialized stories that are easier to manage

• Have a backlog of content for social media and marketing

• Plan launches around your typical flare patterns

Working with Your Publishing Schedule

As indie authors, we have the flexibility to:

• Set release dates that account for our health needs

• Include extra editing time for brain fog days

• Create marketing materials during better periods

• Use scheduling tools to maintain presence during flares

Self-Care Strategies for the Long Haul

Physical Support

Maintaining our health has to come first:

• Regular gentle movement (even if it's just hand exercises)

• Sun protection for photosensitivity

• Stress management techniques (yoga and meditation have been so helpful for me)

• Proper rest between writing sessions (the Pomodoro technique is quite useful)

• Staying hydrated and maintaining good nutrition (nothing like a good glass of water!)

Mental and Emotional Support

The emotional aspects of writing with chronic illness matter. So try some of these and see how you feel:

• Connect with other writers who have chronic illnesses

• Join support groups for writers with autoimmune conditions

• Be open with readers about your health when comfortable

• Celebrate small victories and progress

• Practice self-compassion during difficult periods

Tools and Resources

Essential Writing Aids

Invest in tools that make writing easier:

• Ergonomic keyboard and mouse

• Voice recognition software

• Screen readers

• Writing apps with cloud sync for device flexibility

• Dictation apps for mobile devices

Organization Systems

Keep your writing organized for foggy days:

• Use project management tools like Trello or Notion

• Keep detailed outlines accessible

• Maintain character and world-building bibles

• Use templates for common tasks

  
  

Marketing and Community Management

Sustainable Author Platform

Create an author platform that's maintainable during flares:

• Batch create social media content

• Use scheduling tools for consistent presence (like Metricool, or Buffer)

• Have emergency content ready for bad days

• Be honest with your audience about your posting schedule

Building Understanding

Create a supportive reader community:

• Share your journey when comfortable

• Educate readers about the realities of writing with chronic illness

• Build relationships with understanding beta readers

• Network with other authors who understand chronic illness

Conclusion

Writing with lupus means accepting a different path than other authors might take. It means being kind to ourselves, strategic with our energy, and creative in our solutions. But it doesn't mean giving up our writing dreams. By adapting our methods and expectations, we can continue to create and share our stories with the world – just on a timeline that works for our bodies.

One thing to remember… Your worth as a writer isn't measured by your word count or publication schedule. It's measured by your persistence in showing up for your craft, even if that looks different from day to day.

If you need help with tracking your energy, check out my favorite Daily Spoon & Writing Tracker. This free resource has been quite helpful for me in balancing energy and productivity. 💜

In the meantime, let’s stay connected! Follow me on Facebook, Instagram, and Threads for more tips, encouragement, and updates. Together, we’ll keep finding new ways to thrive in our creative paths. 🌟