What I particularly missed on my journey to diagnosis was having people I could talk to and share experiences with. Connecting with others is the most important reason why I am building Rare & Chronic Voices. I want to bring people together and create a space where we can share our experiences, ask questions and listen to one another.
I also lacked information. Often, I did not know where to find answers or whom to turn to.
Another challenge has been the lack of understanding from friends, colleagues and acquaintances — both then and now. “But you look healthy” or “You seem fit” are things I hear again and again. Yet what people see on the outside does not tell them how I actually feel.
Through my website, I want to create a place where people living with rare and chronic conditions can connect and talk to one another. Information and guidance are part of that. But for me, people and the conversations between them are at the heart of it all. That is exactly what I missed in my own life.
What was missing on your journey — and what would you like to talk about with others?
I would love you to share your experiences in our forum.
Website: https://rarediseaseslensmagic1974.net
Forum: https://rarediseaseslensmagic1974.net/forum/