Six years ago, at the young age of 21, my life took an unexpected turn—I was diagnosed with Idiopathic Intracranial Hypertension (IIH). For those who don’t know, IIH is a chronic illness where your brain behaves as if it has a tumor, even though it doesn’t. Your spinal fluid puts pressure on your brain every single day. It’s exhausting, confusing, and isolating. Doctors sometimes dismiss it as “all in your head” or suggest losing weight. Friends offer miracle cures they’ve read about online. Family may think you’re seeking attention. And your job? Mine terminated me because I was always sick. At least, that was my reality. From the moment this journey began, I have been on an emotional rollercoaster, learning more about pain, resilience, and myself than I ever imagined possible.
When I first received my diagnosis, I was a completely different person. Naïve, ambitious, full of energy, and entirely unprepared for the life-altering path ahead. Perhaps the transformation came from enduring hell and back while having others undermine my experience, or perhaps it came from discovering the core of who I truly am. Either way, this journey has shaped me in ways I never could have anticipated.
Over the years, my life with IIH has been unpredictable, filled with ups and downs, hospital visits, setbacks, and small victories. Along the way, I’ve learned lessons that I hope can help anyone navigating a chronic illness. Here are five things I want to share with you:
1. Be your own advocate. I cannot stress enough how important this is. I’ve lost count of the doctors who knew little to nothing about my condition. It was exhausting having to educate them while in pain, but advocating for yourself is non-negotiable. Seek second opinions when needed. Learn the nuances of your illness. Listen to your body. You are the one living with the pain, the exhaustion, and the uncertainty. Nobody can truly understand it like you can. Your truth matters—never let anyone diminish it.
2. Let people be. This was one of the hardest lessons for me. Early in my illness, I felt abandoned, frustrated by friends and family who seemed to drift away. I carried anger and confusion. But I realized that their inability to cope with my situation was their burden, not mine. I needed to focus on survival and self-care. If they returned, wonderful. If not, that was okay too. Putting myself first didn’t make me selfish—it made me resilient.
3. Rest. When I was first diagnosed, I was juggling full-time work, school, and motherhood. Rest felt impossible. But chronic illness taught me that exhaustion is dangerous. Pushing yourself too far can land you in the hospital. Rest isn’t a luxury; it’s a necessity. Honoring your body’s limits is an act of love for yourself, allowing you to face each day with more strength and clarity.
4. Find love for something. Illness often strips away routines, opportunities, and experiences we once took for granted. For me, scrapbooking became a lifeline—a way to feel productive, creative, and joyful even on difficult days. Find a hobby, a passion, or a small joy that grounds you. It doesn’t erase the pain, but it gives you something to hold onto when life feels overwhelming.
5. Grieve. Chronic illness changes you in ways that can feel like losing yourself. A counselor once told me that waking up to a completely different life is a form of trauma, and that grieving the person you were is necessary. This perspective helped me more than I can express. It’s okay to mourn what’s lost—the life, the freedom, the “normal.” And in grieving, you also make space for growth, acceptance, and newfound strength.
Becoming a chronic illness warrior was never part of my plan. I miss the person I was, the life I envisioned. I watch friends getting married, having children, buying homes, and celebrating milestones, while I’ve been consumed with simply surviving. Yet, this was meant to be my story. I was meant to remind others that they are not alone. Chronic illness has taken much from me, but it has also gifted me something profound: an unparalleled sense of gratitude.
I am grateful to be here, to love my little girl, and to witness life’s small miracles every day. I’ve discovered a tribe of people I never would have met otherwise—people who truly understand, who support, who uplift. Even amid unpredictability and pain, there is so much to be thankful for. Life may not have gone according to my plan, but it has led me to a deeper appreciation for the present, for love, and for the simple act of surviving.
