Epistemics/ Rant

[Ros]

I was one of the unfortunate ones who knew about pfs beforehand, but thought it was fake. I mean truly, how could someone believe a pill would do this to people? If it caused all these things, how could it be on the market? It’s insane. I’ve just been thinking a lot about how I got here, and part of it seems that we’re just not really able to conceptualize experiences we haven’t had. When I took fin, it was a completely new experience that I wasn’t equipped to handle. Slowly, I started getting more and more anxious and depressed, then I had insomnia, then I had some prostate pain. So I finally put it together that fin was causing me problems. The anxiety, as I’m sure many of you know, is not like anything I’d ever experienced. Just this insane pressure in your head telling you you should die. Then when I crashed two weeks after stopping, I never put it together that fin was causing my issues. This drug is a parasite that invades your mind without you even knowing. That’s what’s so scary about it. It’s not like other things, where you maybe have a rash and then you think, oh I’ll stop taking this drug. Obviously there are visible symptoms, but the mental ones make it so much harder for one to defend themselves.

Ironically I think finasteride is beautifully evil in how it works. I mean, it completely destroyed my body and mind without me knowing it. It also preys on people who are insecure, promising a miracle. I wanted to believe in it so bad I was blinded, and I’m usually so risk averse. I don’t do any other drugs or take other medication. I was skeptical of taking fin for the rest of my life, but I was thinking so short term. And it feels like if anything about this condition were different, then it would be more well known and finasteride would be known to be dangerous. If pfs was more visible, if pfs happened to more people, if it wasn’t a hairloss drug but maybe for something more serious, pfs wouldn’t just be thrown aside like it is. People wouldn’t just be called lunatics.

Obviously I blame myself a lot. I knew about pfs. But it just sounded so absurd and unbelievable. I was too trusting of the system, of the people who prescribed it to me who reassured me I’d be fine. I had the intuition not to take it even. I actually considered taking it about a year ago but decided against it because of the possible depression side effects, but then I just became too desperate when I started really losing my hair.

[Erik]

You can’t blame yourself. You show a lot of solid introspection. If it makes you feel any better I had no idea about PFS and I’m in just as much psychological agony for not having googled it. Telling myself I could have been saved with one google search. Had you not known about PFS, like me, I don’t think you would be doing any better psychologically. Hopefully that can help you a bit, for what it’s worth.

We were dealt such an awful hand. My uncle has smoked cigarettes for 40 years, averaging a pack a day. He lives a perfectly good, fun and fulfilling life. The ratio of cigarettes he has smoked compared to the number of finasteride pills which ruined my life is roughly 75,000 to 1. We have tried many times to get him to quit smoking, but he won’t listen. This is despite the fact that his own father died from lung cancer. People are not always rational.

I can only say that we need smart introspective people like you to join us in trying to move this issue forward so we can get justice for all of us. Those who knew about PFS beforehand, like you, and those who had no idea, like me. Please take care of yourself.

[loops]

Since I developed PFS over a year ago, I’ve spent a hefty amount of time blaming myself. A lot of kind people in this community told me not to do that. I think it’s a feeling a lot, if not all of us have had.

Only recently was I able to finally forgive myself. I think we all have to get there our own way. For me it was realizing that I’ve always been insecure about my hair, and unfortunately this drug was marketed to me in a frighteningly precise way. I was bombarded with ads for years until I finally caved. I probably didn’t stand a chance no matter what I like to tell myself. Sometimes, I try to convince myself that if I had just read more about it I could’ve avoided all of this. But we always try to tell ourselves we have more control than we really do.

Forgive yourself. You didn’t know. Regulatory bodies, doctors, pharmaceutical companies all failed you. Unfortunately, those entities are greedy and unfair.

I believe that one day we will figure out what PFS is and how to cure it.

I have an even loftier hope that one day we will live in a world where companies can’t behave the way those selling finasteride do, and there are protections in place to ensure consumers and patients don’t get hurt the way we did.

[Erik]

Also if you want to chat I’m happy to have a call. Just shoot me a message