Post Reply: What did you miss most on your journey to diagnosis?

<blockquote><div class="quotetitle">Quote from <a class="profile-link highlight-admin" href="#">daniel.kraus</a> on September 28, 2026, 8:20 am</div><img src="https://rarediseaseslensmagic1974.net/wp-content/uploads/2026/09/rare-and-chronic-voices-logo.png" alt="Rare &amp; Chronic Voices logo" width="320" height="320" />
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 &amp; 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: <a href="https://rarediseaseslensmagic1974.net">https://rarediseaseslensmagic1974.net</a> Forum: <a href="https://rarediseaseslensmagic1974.net/forum/">https://rarediseaseslensmagic1974.net/forum/</a></blockquote>

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Post Reply: What did you miss most on your journey to diagnosis?

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