Telling people you have PFS

I have told some close family about pfs and they have been really supportive, but they don’t really understand the full impact. I’m starting to get some pressure from friends (not intentional) but questions such as how’s your love life? been on any dates? and I feel really close to one friend in particular. We have been talking about lots of personal stuff and I’m thinking about talking about the pfs.

Has anyone else told any friends? Did you phrase it that you have had a reaction to a hair loss drug which is causing side effects. It’s just very difficult to admit and I just worry if other people beyond circle of friends find out about it.

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Isn’t the worst part about going bald that you can’t hide from anyone who sees you the fact that you have declining health? Even if you are not aging prematurely internally if a lifestyle imbalance is causing your hair to thin and recede it has a big effect on making you look older than you are. You are certainly not an example of youth and virility if you don’t have thick oily hair.

Question to all why do you care if people find out? Are you trying to keep your reputation as a very masculine man. And obviously those types of men do not do things for vanity. Or you’re afraid of being made fun of? You should be more ashamed of having taken fin than worried about anyone knowing that you have taken it.

But the real shame are the side-effects which leave you as a less competent and more selfish man. So the focus should be on getting cured as soon as possible to become less pathetic. It’s more important than hiding what you have.

I’ve been quite open both with family and close friends, and blessed as I’ve had friends who are supportive and somewhat understanding to the best of their ability. This has played a big role in helping me cope.

I don’t know if I’m correct in assuming this but I believe you suffer from sexual side effects primarily, and IMO those are the easiest to convey to a person who is close to you. The other sides are a vastly harder to comprehend unless you’re going through them yourself. I think you should pick someone you really trust and just be open with them, keeping this to yourself 24/7 is quite a pain and worst case scenario, you eliminate an unhealthy person from your life. :stuck_out_tongue:

@ignite

I found this article while searching for the Chinese man who grew large breasts from taking a counterfeit form of fin, anyone know what I’m talking about?

I told all my friends, they said it sucked but they don’t really comprehend it. For example my side effects are all pretty mild so when I tell someone I have insomnia but I can still sleep 4-6 hours a night they think it’s not that bad. Same with sexual side effects, if I can still get an erection people don’t think it’s that bad. And I can’t really blame them, that’s what I thought when I took fin, I thought soft erections weren’t a big deal. But how wrong I was. Edit - Actually, yea I can blame them, they’re stupid, and I was stupid too lol

I think the biggest thing they took away from it was not to do any prostate drugs cause they’re all alpha/androgen blocker drugs like fin and most men get enlarged prostates and end up having a doctor prescribe them finasteride without telling them it can cause permanent side effects. Who knows if they’ll remember a few decades from now. I have one dumbass friend who I warned about using hair products that’s now using minoxidil, he could get PFS any time now. But he was never that bright having only graduated high school.

Anyway, so I basically gave them the best advice they could get in life and now if they ever ask a favor from me I usually just say no lol cause having PFS has made me unsympathetic to any problems anyone else has, cause it doesn’t compare to what I’m dealing with. So I don’t give a fuck about anything anymore lol. I don’t care who knows either, I’m not shy about stuff so it’s whatever.

Thanks guys that’s really helpful and made me think a bit more positively about telling friends.

Hi, i am telling my problems to everyone who is asking me how i am doing. Family, friends, people at work…
I tell them that i have severe problems in my body that came after stopping propecia, a drug for hair loss. I have absolut no problems to tell it and the reactions so far ar great, they ask a lot of questions and give me all a lot of support. Of course some people also say “but why have you taken this shit, only for your hairs”, then i tell them that 20 years ago a doctor prescribed me this and i had no idea what effect this drug might have. I was told it was a new fantastic save medication…
I even had one person that told me that the brother of her housband also is taking this and she was very afraid. She told him my story and he has immediately stopped taking propecia. So i think it’s very important to share our storys.
There is nothing to be ashamed of, we are victims of a so caled “safe” drug. I lost 10 months of my life and i dont know how many more will follow and what hurts me most is that my wife and my children also are afected by my condition. I can not be the man/dad that i should be and this is very frustrating. In my 20 years of taking propecia i spend about 12.000€ for this drug and the result are these problems…I will tell this to so many people as only possible.

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I try to tell my closest friends, or friends that I hope will become close friends. Even the ones that are really well-intentional and care about me deeply have a hard time understanding, especially the profound effects PFS have on motivation, ambition, self-esteem, mood, etc. People, because they are human, simply cannot imagine what’s it like to be non-human, as libido is so fundamental to what makes one human that its absence renders one almost a different species - both physiologically and psychologically.

This of course is true for any serious problem one has - people generally lack the ability to experience deep empathy, as that is predicated on the cognitively-taxing process of imagining things beyond one’s personal experience.

I am particularly annoyed, even insulted, when a friend whom I have told in detail about my PFS asks me about new romantic developments - as if my PFS could be overcome if I simply tried hard enough or, alternatively, stopped thinking about it.

Recently, someone I regarded as a very close friend, told me – upon hearing my PFS story – that I had made “an incredibly poor decision” starting Propecia (rather than blame Merck for the fraudulent research and marketing or the drug approval process in general), even though I started the drug long before there were any official warnings about long-term side effects, or any research on PFS.

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Most people are harder on others than they are on themselves. He’s right but he also sounds like a moron who doesn’t care about what happens to you. While he told you that with a straight face implying you should have known better or you deserve it most likely he would act outraged if it happened to him or his family member and go to the news making big noise about the injustice demanding the world stops spinning because his problem is what is most important of all, not caring one bit about what he said to you or changing his views of you.

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Yes, it sounded like he didn’t care about what had happened to me or even that he thought I deserved it (for being stupid and/or vain). I thought it was very insensitive of him and was quite disappointed.

I even think he is very touched by your story, even impersonalized it, but cannot handle that situation and tries to find distance. Best

Yeah, I very much understand. Besides libido and any sexual feeling, my ability to feel any pleasant feeling or reward is completely gone. I find it quite strange when I see other humans these days, laughing and happy as you tend to in summer. I tend to be jealous of, like, dogs of various ages at this point. When I’m not brainfogged, I still have a considerable intelligence, although I have completely fragmented memory (particularly long term) and much reduced speed of processing input - I still couldn’t drive. This leaves me essentially feeling like a machine, but one in extreme physical pain.

Generally, I’ve completely given up even trying to explain. I deeply, deeply wish my ex-partner and soulmate could have truly understood, but there’s literally no way of conveying what PFS takes away from you, and in the absence of evidence it’s just another thing to have to come to terms with. I began to find it very exhausting attempting to explain to those important to me and very hurtful when they’d say things that showed how little they “got it”. I’ve lost most of my friends due to PFS, largely because I simply couldn’t maintain the friendships, but thankfully a few close friends have tried very hard to accept they won’t be able to understand but be supportive in that context. One I was staying with when I crashed so looked after me for a month or so, and for someone with no idea what was happening, I don’t think anyone could have handled it better. In a situation like this where the qualities of people are laid bare when you can no longer offer them anything, you do see true colours. I am grateful to say my closest friends are kind and loyal, which are to me the finest qualities a person can have. I’m sad to say though that no matter how hard anyone tries, I always feel deeply alone.

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Are you able to leave the house much Axolotl? This sounds like me in regards to feeling alone, it’s extremely hard to tell anyone this sort of stuff, when i suffered with mental health before accutane, my best friend for 10 years just stopped contacting me, he just left me and that made me extremely sad, he almost died from alcohol poison at 18 and i brought him to hospital, he was hosting a massive party as he loved being the centre of attention, 300 people went, not one person, i mean not one stopped to help when he was vomiting on himself almost dieing on the ground, i was the only one who helped him and he just forgot all that and disregarded i exist, everyone I’ve ever tried to help spat in my face when I needed them, i just feel like if i die tomorrow, not one person would care bar my family.
It’s good you have supportive friends, that’s absolutely essential i think. Not just fake people who like you when your not an issue to them.

A bit, but not like a normal person. I just tend to walk in a forest or go to university to get research. In the first months I couldn’t leave the house alone at all. I know what you mean, I’ve had similar experiences and it does make the world seem selfish and unkind when people you thought you could always rely on vanish…It’s all so very cruel, but we should never lose faith in people’s better nature. I am very grateful for the people here who support me. I’ve met here the bravest people I’ve ever come across, and the friends I’ve made are thoughtful, resourceful and dedicated, and showed me you can find light and kindness in the darkest place.

ps i would care, so don’t do that.

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Sorry didn’t mean to imply anything, just meant in general how i think people would react, but i guess thats me thinking negative. Yes the community here is very kind and strong thankfully, one of the only paces i feel i can go to since I can’t really talk to anyone else about this.

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mirroring axolotl’s sentiment, I’d care too.

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Thanks guy’s, I’ve just been worn down my whole life and accutane has broken me in every way possible right now, it’s hard sometimes to keep any sort of hope when your physically so bad, like every single part of my body, one or two I could manage, but I mean every single sense from sight, touch, smell etc, it’s the fear of living life with not being able to experience it, I’d genuinely trade my legs for the rest to be fixed as i could get prosthetics, but I’m going to try fight this with as much fight i have left, I’ve lasted this long in my life fighting crap, and encouraged suicidal people in the past to never give up as i genuinely always cared for people, so I can’t give in this early and let what I said be in vain, I’ve even done a documentary on mental health and would happily appear in one if the PFS community made one for both that and accutane. People used to always ask me for advice, I’ve heard people go through horrible stuff in the past, but now it’s me in that situation and fortunately I have all you amazing people to talk to.

It is very common for people to abandon you when you are no longer “fun” to be with. I was also shocked when it happened to me, at a time when I needed my friends the most. In my case it was during SSRI-withdrawal, which was unrelated to PFS. People are rather selfish and they will drop you like a hot potato the minute they perceive you as a liability rather than an asset. The sad truth is there are very few people who truly care about you and who will stick by you no matter what. They exist though, no matter how rare, and anyone who has such people in their life is truly blessed.

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I was one of them people, not in a bragging way but i never left anyone in my life, everyones just left me. I guess I’ve been with the wrong people my entire life. It’s just in human nature for other humans to look out for their best interest and i guess you can’t blame them, but it’s the people who go out of their way to help others in this world that are the ones who make a difference and are remembered for a very long time.

"Sometimes it is the people no one can imagine anything of who do the things no one can imagine."
-Alan Turing

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I second what everyone here is saying. I care. I’ve told my close family, but since I have extreme mental sides (horrible visual spatial processing/derealization, etc) it’s impossible to describe. Every single day so far has been a fight. I haven’t felt at peace at all, and when I do distract myself enough to forget for a few minutes, I get euphoric only to be let down which makes each hit of reality even harder. My mind was something I could always rely on and now it feels as fragile as a thin piece of ice. My strength was in my fortitude and now the grocery store is a stressful place. I wish everyone here the best of luck and I do care about all of you, as the people on this forum have given me their friendship and time without expecting anything in return.

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