I have lived with chronic illness for over 26 years. That may seem like a long time for someone in their 30s, and that’s because it is. Every diagnosis I carry is complex, and each one is considered rare. In fact, almost all can be found on the National Organization for Rare Disorders list, which means fewer than 200,000 people in the U.S. are affected by them. Living with conditions that are classified as rare has always made me feel different than those around me. It can be isolating knowing your experiences aren’t “normal”, and that very few people, even doctors, understand what your body is going through. It shaped my childhood, my life choices, relationships, and the way others perceive me.

Living with rare, complex illnesses is deeply dividing. Even with medical care, therapy, and endless hours of research, there are still moments when I feel like something about me is wrong. I ask myself questions on a daily basis that don’t have clear answers:

Will I be able to keep this new job?

How do I explain this to others without feeling like a burden? When is the right time to share?

Can I have children? Are these illnesses genetic?

Will this progress as I get older? Will I need more help?

The uncertainty never goes away. Doctors help manage my symptoms, therapists help me cope, but there’s no escaping the feeling that I will always move through the world differently. It might sound strange, but sometimes the physical pain feels easier to handle than the mental weight. The grief, isolation, and questions about my future is endless and invisible. It’s what leaves me feeling the most tired.

Over time, I’ve come to see myself differently. My conditions may be rare, but so is the strength it takes to live with them every day. My existence is not one of unluckiness, but of survival, resilience, and choosing to keep fighting anyway.

This is where The Chronic Diaries comes in. Writing about myself is fairly new to me. It took awhile to figure out how to process and cope in a healthy way. Putting feelings into words has been healing, especially as these thoughts and doubts swirl inside me. Sharing my story here is not just about documenting symptoms or setbacks, it’s about creating meaning out of the mess, reminding myself that my life can be more than my illnesses. My hope is that this blog can be helpful for others who may still be in the thick of it, for others who haven’t found the words or the perspective to separate themselves from their diagnoses, and even for those who don’t know what it is like and just want to understand. If my honesty helps even one person feel a little less alone, then opening up with these pages will have been worth it. I wish I had done this 26 years ago.

As a reminder, I am not a doctor. I don’t have medical answers. What I do have is decades of lived experience, and in that way, I am the leading voice in my journey.

My story isn’t polished or perfect, but it’s real and it’s mine. Through sharing it here, I hope to remind others living with chronic illness that our lives can hold both struggle and hope.

This is why I’m starting The Chronic Diaries: to share my truth, create a space for connection, and remind others that they’re not alone.

Thanks for reading.