Living with a long-term illness like keratoconus isn’t about winning a battle; it's about carrying a weight that becomes a part of you. This journey is unique and deeply personal, and while others can offer support, the true experience is yours alone.
Keratoconus is a progressive eye disease that thins and reshapes the cornea, leading to distorted vision. For me, this means frequent visits to the ophthalmologist, countless scans, and trying various treatments to manage my condition. It's a constant reminder that my vision isn't something I can take for granted.
One of the most challenging aspects of living with keratoconus is the feeling of isolation. You can't truly share the pain or the frustration of not being able to see clearly. Friends and family can empathize, but they can't experience the blurry, double vision or the discomfort of wearing rigid contact lenses. The frequent trips to the eye doctor, the endless scans, and the new prescriptions are things I go through alone. Each hospital visit and every treatment is a reminder of the weight I carry.
Everyday tasks like reading, driving, or even recognizing faces can be tough. The world often looks distorted, and bright lights can be unbearable. These challenges are just part of my daily life and shape how I interact with the world.
Despite these challenges, I've found ways to adapt and find strength in my journey. Acceptance has been crucial—understanding that keratoconus is a part of my life, not something I can fight or defeat, but something I can manage and live with. The support of friends and family, even though they can't share my exact experience, has been invaluable. Their presence, whether it's driving me to appointments or simply listening to my frustrations, makes a significant difference.
Taking care of my overall health, including my mental well-being, is essential. Practices like meditation, exercise, and engaging in hobbies help me stay grounded and positive. Staying informed about the latest research and treatment options gives me hope and a sense of control over my condition.
There are days when the weight feels heavier, and the frustration of dealing with keratoconus can be overwhelming. On those days, I remind myself that it's okay to feel this way. It's okay to have moments of doubt and sadness. What's important is to acknowledge these feelings and not let them define my entire experience.
I've also learned to celebrate the small victories. Whether it's a day with minimal discomfort or a successful appointment with my eye specialist, these moments of progress are worth acknowledging. They serve as reminders that while keratoconus is a part of my life, it doesn't control it.
Connecting with others who have keratoconus has been incredibly empowering. Sharing experiences, tips, and encouragement with people who truly understand what I'm going through has created a sense of community and support. It's a reminder that while each journey is unique, we don't have to walk it alone.
Living with keratoconus is a journey filled with ups and downs. It's not about winning or losing, but about finding ways to carry the weight and continue moving forward. By sharing my story, I hope to connect with others who are on similar journeys and remind them that they are not alone. Each day brings new challenges, but also new opportunities to grow and adapt. This is my story, and I carry it with me, always.
Valerie Coulter