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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:<a data-mce-href="https://www.canva.com/design/DAGcO0dfhVA/uHxHh1oPd90mSZgx8hT_UQ/edit?utm_content=DAGcO0dfhVA&amp;utm_campaign=designshare&amp;utm_medium=link2&amp;utm_source=sharebutton" href="https://www.canva.com/design/DAGcO0dfhVA/uHxHh1oPd90mSZgx8hT_UQ/edit?utm_content=DAGcO0dfhVA&amp;utm_campaign=designshare&amp;utm_medium=link2&amp;utm_source=sharebutton">Daily Reflection Sheet: Print your copy here.</a> 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!

Becoming Your Own Advocate: Lessons from My Journey

Friendship isn’t just about shared memories or inside jokes; it’s about finding people who stand by you through life’s most challenging moments. My journey with chronic illness has taught me so much about what true friendship looks like, and at the heart of it all is Grace, my forever friend.Grace was there when high school didn’t start as I’d hoped; the start of my high school journey was filled with hospital stays, uncertainty, and a body that felt foreign to me. She saw past the weight gain from prednisone, the exhaustion, and the fear and reminded me of who I was. Grace didn’t just stay when things got hard; she stepped up, making me feel seen and loved when I felt like a stranger to myself.But real friendships aren’t without challenges. Grace and I have had our share of ups and downs when jealousy and miscommunication tested our bond. Sometimes, I worried about losing her, especially as she formed new friendships while I was in the hospital and pursued her passions. I learned that friendship isn’t about clinging to someone out of fear but trusting the foundation you’ve built together.One of the most valuable lessons I’ve learned is that true friends show up, not just for the significant milestones but for the small, everyday moments. Grace has been there to celebrate my wins, hold me in my losses, and remind me of my worth when I doubted it. Through shared experiences like navigating dyslexia, we’ve embraced each other’s “glitches,” laughing together and supporting each other unconditionally.Our friendship wasn’t always easy, but it was worth it. Hard conversations, moments of distance, and even heartache didn’t weaken our bond. That is what strengthened it. They taught us to communicate openly, forgive wholeheartedly, and love each other as we are, flaws and all.If there’s one thing I’ve learned, it’s this: good friendships are messy, imperfect, and full of challenges. But they’re also transformative. They teach you loyalty, resilience, and the power of showing up for someone else. So, thank you to Grace and all the friends who make life a little brighter. You’ve shown me true friendship is one of life’s greatest gifts.

The Lesson of Good Friendships

Family has always been the cornerstone of my life. Family is the steady foundation on which I’ve built who I am today. It’s not just about shared DNA; it’s about the people who walk with you through the highs and lows and hold you steady when life feels impossible. Through my journey with Granulomatosis with Polyangiitis (GPA) and all its challenges, my family has been my rock, my light, and my most significant reason to keep going.From the beginning, my parents have been my unwavering support system. My mom, my ultimate fighter, has been the one pushing for answers when doctors couldn’t, staying up late researching, and holding me close when it all felt too heavy. Her persistence and resilience taught me that strength is love, patience, and hope. My dad, calm and steady, was the stability I needed. Whether rubbing my back all night to find some rest when sleep was a foreign thing to me due to the high dosage of prednisone or simply listening when I felt overwhelmed, he showed me the value of quiet, consistent support.My siblings have been my teammates, my confidants, and my cheerleaders. They may not have always understood my struggles, but they’ve shown up in the most important ways, bringing laughter when I needed it and simply being present when words weren’t enough. Even when I felt different or like a burden, they never made me feel alone.And then there are my cousins and extended family, who’ve been there through every chapter. We’ve shared countless memories, from Sunday dinners to family vacations, and their love has been a constant source of comfort. They’ve laughed with me, cried with me, and reminded me, even in my most challenging moments, that I’m more than my illness.Family isn’t just about being there when things are easy. It’s about showing up in the messy, challenging moments but learning to love each other through differences, challenges, and pain. My family has taught me resilience, patience, and finding light even in the darkest times.As I move forward, I carry their lessons with me: love deeply, show up fully, and remember that no matter what life throws at you, you’re never alone. Family is my backbone, a source of strength, and a constant reminder that life is worth celebrating , even with glitches.

The Lesson of Family: Aways as a Rock

<h2>If there’s one thing I hope to achieve with this blog, it’s to create a space where people feel seen, heard, and less alone.</h2>Chronic illness, mental health struggles, or life’s challenges—we all have our own unique struggles, but we’re all in this together.I aim to show that our unique experiences don’t have to hold us back. Instead, they can propel us forward, helping us live fuller, more authentic lives. We get one life, and making the most of it is up to us. So, let’s embrace our glitches, find joy in the little things, and live purposefully. Together, we can navigate the ups and downs of life and create a community that celebrates resilience and hope.One of the most important lessons I’ve learned is that you can’t navigate life’s glitches alone. Building a support network of friends, family, and even online communities has been a game-changer for me. My roommate in college was one of my biggest supporters. She didn’t just see my struggles; she stood by me through them, offering a helping hand or a kind word when I needed it most.It’s not about finding people who understand every detail of your journey. It’s about surrounding yourself with those who care, who show up, and who remind you that you don’t have to face life alone. Whether it’s a late-night conversation, a shared laugh, or a shoulder to cry on, these connections are invaluable.What are your glitches? <a data-mce-href="https://anniestrong.com/contact" href="https://anniestrong.com/contact" data-mce-selected="inline-boundary">Let me know via my contact page</a>. Let’s keep this conversation going—because no one should feel like they’re alone in this.

A Community of Glitches

<h2>Living with a chronic illness is no small feat. It’s challenging, but it also teaches resilience and gratitude.&nbsp;</h2>Here are a few quotes and resources that have helped me stay grounded and hopeful:<blockquote>Healing doesn’t mean the damage never existed. It means the damage no longer controls our lives. — Akshay Dubey</blockquote><blockquote>Sometimes the smallest things take up the most room in your heart. — A.A. Milne </blockquote><h3>Resources:</h3><a data-mce-href="https://lymphoma-action.org.uk/sites/default/files/media/documents/2020-05/Spoon%20theory%20by%20Christine%20Miserandino.pdf" href="https://lymphoma-action.org.uk/sites/default/files/media/documents/2020-05/Spoon%20theory%20by%20Christine%20Miserandino.pdf" target="_blank" rel="noopener">Spoon Theory by Christine Miserandino</a>: This simple analogy helps explain what it’s like to live with limited energy due to chronic illness. (Google it—it’s a game-changer!)<a data-mce-href="https://chronicillnessbloggers.com/" href="https://chronicillnessbloggers.com/" target="_blank" rel="noopener">Chronic Illness Bloggers Network</a>: A supportive community of bloggers sharing tips, personal stories, and resources for managing chronic conditions.<a data-mce-href="https://themighty.com/" href="https://themighty.com/" target="_blank" rel="noopener">The Mighty</a>: An online platform with articles and personal stories about living with chronic illness, mental health, and more. &nbsp;

Resources for Living Well with Chronic Illness

<h2>A bad test grade? A frustrating doctor’s visit? A funny story about spilling coffee all over myself? All glitches. Life moves forward, and so do we.&nbsp;</h2>These moments aren’t failures; they’re lessons and opportunities to laugh at ourselves. They’re also simple reminders to slow down and breathe.I’ve diagnosed myself with “glitch syndrome,” which basically means I’m a hot mess. But hey, aren’t we all? I’ve realized that life’s imperfections make it stronger and more enjoyable. They push us to grow and shape us into the people we’re meant to be. Why not embrace them?Some days, I wake up feeling great. Those days, I seize the day by going outside, spending time with loved ones, and doing things that make me happy. On other days, I wake up feeling less than stellar. On those days, I find joy in smaller moments: a good cup of coffee, a cozy blanket, or my favorite movie. Finding joy in the little things makes even the most challenging days manageable.

Finding Joy in the Little Things

Annie Strong

My awesome life thriving through the everyday struggles of chronic autoimmune diseases. It will get better; I found my way. Maybe I can help you find yours?