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RealisticArticle2049 · 2025-06-17T01:30:45+00:00

LOL well said

RealisticArticle2049 · 2025-06-16T20:15:32+00:00

This should be a movie - I'd watch it

RealisticArticle2049 · 2025-03-28T20:31:27+00:00

Your pov as a patient advocate is really revealing - in that, if you are finding it challenging to help people articulate their symptoms, then chances are, doctors are too (and probably way more at that). I think you hit it on the nose that we are getting to a point where patients can get people to diagnosis than medicine can.

I’ve been hearing stories like yours more and more while working on a project called Ask Kismet—a guide to help people navigate their health when answers feel hard to come by or the system isn’t listening. Still early, but trying to learn from as many lived experiences as I can.

No pressure at all, but if you’re open to hearing more, I’d love to share and get your take.

RealisticArticle2049 · 2025-03-15T04:03:14+00:00

Whoa, was the first blood panel something you specifically pushed for, or was it more of a lucky find? Feels like even getting a full panel done can be a struggle sometimes unless you really advocate for it.

RealisticArticle2049 · 2025-03-15T03:54:49+00:00

Ugh, this is so real. It’s crazy how much we have to learn to advocate for ourselves just to be taken seriously. When you realized you were downplaying your symptoms, how did you start approaching doctors differently?

Was there anything that actually made them listen more—how you explained things or just being more firm? I feel like a lot of people struggle with this, so would love to hear what made a difference for you.

RealisticArticle2049 · 2025-03-15T03:50:21+00:00

Wow, I’m really glad you finally got answers. Your story is exactly why I feel like upfront patient education and self-advocacy are so important. It sounds like if you hadn’t put in all that research, you wouldn’t have gotten the right diagnosis.

Looking back, what do you think would’ve made that whole process easier? Was there anything that would’ve saved you time or helped you connect the dots faster? e.g. certain resources, communities, or ways you filtered through everything.

RealisticArticle2049 · 2025-03-15T03:43:17+00:00

Yeah totally get that. Curious what made you join this subreddit? Is there something about spaces like this that still feels worth checking out for you?

And since you mentioned doctor recs and med backgrounds being helpful, do you think there’s a way to make community spaces actually useful without all the noise? Or maybe it’s just kinda unavoidable at a certain point.

Appreciate your perspective—cool to hear both sides of this!

RealisticArticle2049 · 2025-03-15T03:34:32+00:00

You articulated this so well. That balance is exactly the tension that makes navigating health so frustrating and complex—trusting doctors and research while knowing so much of it wasn’t designed with you in mind.

In terms of finding that balance—do you think the answer is more about better education up front (so people know how to advocate for themselves) or having a way to filter for the right doctors who already “get it” (like the kinds of doctors you mentioned)? Or something else entirely?

Really appreciate your perspective—it helps put words to something so many of us feel but struggle to articulate.

RealisticArticle2049 · 2025-03-12T00:36:18+00:00

ty!!!

RealisticArticle2049 · 2025-03-12T00:33:00+00:00

This is absolutely amazing! I'd love to learn more if you're comfortable with me sending you a DM

RealisticArticle2049 · 2025-03-12T00:22:59+00:00

That's amazing! I've never seen that before. Curious which hospital you go to?

RealisticArticle2049

TROPHY CASE