Time for me to share my story publicly. I shot the podcast last year with Mitch and I encourage everyone who is willing to do so. I’m eager to get my story out because we have to stop hiding in the shadows and need to grab this disease by the horns. The outside world is never going to care about a bunch of anonymous forum posters. We have to humanise this disease, and only we can do that as sufferers. We have all lost and suffered greatly because of this affliction, and it doesn’t make sense to me that we stay quiet about it. Our stories need to be heard.
We also have nothing to be ashamed of. The system should be ashamed for perpetrating such a monumental unforgivable failure. I’ve met some truly remarkable people in this community, people I think I will be friends with for life. Our lives hold immense value, let’s not go down without a fight.
I’ve also learned that professionally speaking people are understanding of this disease and it doesn’t carry any repercussions to talk about it, even in a context like South Korea where people are less liberal and more conformist.
To me, the hope of ultimately fixing this so I can live my life again is more important than any embarrassment I might feel. Even if someone were to say that hope is infantismally small, which I don’t believe it is, I would rather go down fighting.
2023 needs to be the year in which the dam starts to break and PFS gets treated like the medical emergency that it is.