To my younger self: Challenges will shape you into someone incredible

Dear 16-year-old me,

I chose to write to you instead of the 5- and 8-year-old versions of you because all I’d do is hold the younger versions and whisper that you’re loved.

I know you’re tired. You’re angry, and you feel misunderstood. You’ve lived your whole life through pain and loss, and in a constant state of fight or flight. These feelings will feel magnified for some time, and you’ll eventually seek help to gain the right coping tools. But trust me that this journey is shaping you into someone incredible. All of this will empower and prepare you for the wild ride that lies ahead.

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Be kind and have grace

Please don’t underestimate yourself. Please don’t hate yourself. Please don’t harm yourself. Be kind and have grace with yourself and your body. You’re so strong, more than you realize right now. I wish, today, that I could have the strength you already carry. You’re that unique and mysterious person you’ve always sensed you are. You just don’t quite see it yet. With time, you’ll find validations, answers, and even your true purpose as your path will reveal itself.

You don’t yet know this, but your health battles began when you were born. They’ve already played a huge part in your life, even if you don’t quite understand it yet. Your symptoms of IgG4-RD have included recurrent ear, nose, and throat infections, severe dryness, and breathing struggles to chronic pain and fatigue, as well as those neurological sensory triggers that looked like temper tantrums. I promise you it’s all connected. Although you didn’t receive any of your diagnoses as a child, there will come a pivotal moment in your 20s and again in your 30s when everything will start to make sense.

A few practical things to start doing right away would be to keep a symptom journal (dates, severity, triggers), save every test result and letter, photograph scans and pathology reports, and make a list of every doctor and call. This list isn’t obsessive; it’s evidence. Plus, it’ll prove useful as you continue to move from country to country.

The ride is long and tough. You’re going to feel like you’re losing your mind many times. But your resilience, combined with your big, kind heart and your refusal to give up, is what will save you. Things are almost never going to go how you want them to, but remember that everything will happen exactly as it needs to and in its own time.

If I could send you a letter across time, I wouldn’t give you a diagnosis or a miracle cure. Instead, I’d give you a map and a fierce reminder that none of this struggle is your fault.

You have permission to trust your instincts and ask questions. You also have permission to refuse what doesn’t make sense and to advocate for yourself loud and clear. They’ll call you “difficult” for asking why, for insisting on a second opinion, for not accepting vague answers. Wear that label like an armor. Your refusal to accept vague answers, your loud mouth, your bluntness: These are not flaws.

Your voice, your anger, and your curiosity are tools, weapons even, that will serve you well in fighting for your future and your health.

Turn anger to action

Anger is a compass, not a curse. It’ll flare when you’re dismissed, and you’re going to face a lot of dismissals along the way. Let that flare point you toward action. Turn outrage into questions, into petitions, into op-eds, into meetings with researchers and legislators. Let it fuel late-night emails to those who might listen, and morning calls to those who have answers. But also learn to translate heat into strategy, and pair emotion with evidence, with a clear ask, with a next step. Anger without a plan burns you out. Anger with a plan changes things.

It’s not what happens that matters most, but how you react to what happens. Life challenges will test you, throw sticks and stones your way. I’m here to tell you that with your courage and heart of gold, you’ll not only weather the storm, but also become the storm — an unbreakable force of good.

And that, my sweet brave soul, is your greatest power. Hold your head up high and keep being you.

Love always,
Your future self

P.S. If you’re reading this letter as someone who’s in the beginning phases of your disease, know that your journey is yours. Trust your instincts, surround yourself with allies, and remember that your voice deserves to be loud. The future belongs to those who dare to speak up. So go ahead and claim your space, ask your questions, and advocate fiercely. You’re more powerful than you realize.

Note: IgG4-RD News 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 IgG4-RD News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to liver disease.