Becoming Your Own Advocate: Lessons from My Journey

Living with a chronic illness like Granulomatosis with Polyangiitis (GPA) has taught me that advocacy starts with yourself. Learning to be your strongest advocate can feel overwhelming initially, but it’s one of the most empowering things you can do for your health and well-being. Here’s how I’ve embraced advocacy in my life and what I’ve learned along the way:

1. Track Everything: Creating a Visual and Written Record
One of the most essential tools I’ve discovered is documentation. My journey has shown me the value of keeping a running file of photos and notes about the random symptoms on my body. These records have been invaluable during doctor’s visits, helping to identify patterns or pinpoint what’s going on when something feels off.

Start a Photo Album: Take photos of any new or unusual symptoms, such as rashes, swelling, or discoloration. Your medical team can refer to these images.
Daily Reflections: I’ve created printable daily reflection sheets to track my symptoms, food intake, energy levels, and overall mood. These sheets can be kept in a binder and brought to appointments to give doctors a clear picture of your health over time. You can download and print them here.

2. Journaling for Clarity and Support
Writing down how I feel each day has been a game-changer for managing the emotional and physical challenges of chronic illness. Journaling helps me process my feelings and provides a tangible record of what makes me feel better or worse.

Notes of Inspiration: I write encouraging notes to myself on tough days. Reminders like, “You are strong” or “This is just a glitch, not the whole story,” can shift my mindset.
Track Your Triggers: Keeping a food journal has helped me identify triggers like gluten or red meat that worsen my symptoms. This awareness allows me to make informed decisions about my diet.

3. Be Organized: Plan and Prepare
Staying on top of appointments and medications can feel like a full-time job, but organization is key. Here’s how I manage:

Schedule Appointments in Advance: Create a calendar to track upcoming visits with specialists or routine checkups. This ensures nothing slips through the cracks.
Prepare Questions for Doctors: Use your daily reflections to jot down questions for your healthcare team. Going into appointments prepared ensures you get the most out of your time with them.

4. Empower Others to Advocate for Themselves
Sharing my experiences has been one of the most fulfilling parts of my journey. I encourage kids and parents to take ownership of their health by creating binders filled with records, photos, and notes. Advocacy isn’t just about asking questions at appointments; it’s about taking an active role in your care.

Advocating for yourself is more than managing symptoms; it’s about reclaiming control and finding strength in the uncertainty. Whether you take photos of a strange rash, journal your day, or simply remind yourself of your resilience, these small self-care acts add to a larger picture of empowerment.

You are your strongest advocate. By tracking, journaling, and preparing, you are managing your health and owning it.

Resources to Help You Start:

Daily Reflection Sheet: Print your copy here.
Advocacy Tips: Check out The Mighty for stories and strategies from others navigating chronic illness.
Let’s connect: What do you do to advocate for yourself? Share your tips and experiences with me through the contact page!