New from Rare & Chronic Voices: Growing Together · United States · España · About Us.
What did you miss most on your journey to diagnosis?
For me, what was missing most was having people I could talk to and share experiences with. Someone I could ask questions and tell about what I was going through. Connecting with others is the most important reason why I am building Rare & Chronic Voices.
I also lacked information and guidance: Where could I find answers? Whom could I turn to?
And even today, I sometimes hear friends, colleagues or acquaintances say: “But you look healthy” or “You seem fit.” Yet my appearance does not necessarily reflect how I feel.
What was — or is — it like for you? What was missing, and what would have helped?
You are also welcome if you do not have a diagnosis yet. Share only as much as feels right for you. A few words are enough.
Warm wishes,
Daniel
Website: https://rarediseaseslensmagic1974.net
Forum: https://rarediseaseslensmagic1974.net/forum/