Telling people you have PFS

I agree with Sibelio.

I came to terms with this a long time ago Devolution, and it’s best you do too. Most of the people you meet are not genuine, if you’re blessed you’ll meet a few every so often. In my 19 or so years, I’ve gone through 100s of friends, out of which I have maybe 10 people who calls themselves my “best friend”, from which maybe 2 (and my girlfriend) have been by my side throughout PFS, helping me deal with the bad times, and celebrating the good.

Just hang on and try to socialize as much as you can, hopefully you’ll run into some gems.

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It is difficult to discuss this subject with the people around you but is it for fear of being rejected, out of shame for being sick for having consumed a molecule for aesthetic purposes, for fear of being judged, abandoned? Not easy to sort out and face our fears but it may be beneficial to dare to explain to your loved ones who will certainly have noticed that something is wrong and that will have supposed so many probable reasons … So of course some will not understand, will leave but others will reach out to you, try to understand … And we must never forget that there is no shame to be a victim and that to be quiet again and again is the game of labs, unscrupulous prescribers and prevents us from moving forward. I dream of the day when all will find the strength to decry this is what happens to me, that’s why and then finally things will progress more!

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It’s strange the things you envy, having this condition. Particularly at first, any time I’d see a completely bald man I’d feel very jealous of them because they (very likely) do not have pfs. Contrast this to before getting pfs where I’d feel some form of pity when seeing bald guys. Now when I look at people I often think how solvable most of their problems are and how all I had to do to win at life was not take finasteride. That was it. Even the most impoverished, “low status” life is leagues better than pfs life with unlimited funds. That’s how important one’s health is.

The feeling of being utterly alone is something I also experience although I will say having people on forums such as these who can empathise and know a similar experience has been incredibly helpful. The first guys who got severe pfs, before the internet had really hit its stride, were truly alone in their struggle and it pains me to even try to think of how their experience must’ve been without forums and fellow sufferers.

Weird, only yesterday I was thinking that I think I’d rather lose a hand or leg or something than have pfs.

Your symptoms sound very much like mine. Supermarkets can be particularly trying places for me. If I spend too long in there it can honestly feel like I have dementia and I’m a confused and scared old lady. Also have the visual spatial processing problem to the point where I will not drive a car anymore (previously good driver). I’d be putting my own life and others at risk trying to drive in my current condition. The visual processing problem is possibly improving ever so slightly for me the last week or so? I cannot say for sure, day to day things jump around so much, nothing is linear with this condition it seems. I’m hoping time will improve my symptoms but who knows.

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Just astonishing, isn’t it. Literally that simple.

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It really is that simple and when I try to think of things I’m grateful for during the day the same thing stands out to me:

I’m grateful I didn’t take finasteride five years ago when I first realised I was balding and I got an extra five years of life.

That would look weird to someone who hasn’t experienced pfs. “But they’re still there writing on an internet forum” they might think. But some four months after crashing, I do think of myself in the past tense most moments of most days. It’s impossible to describe to somebody who hasn’t experienced it. To be clear, to anyone reading this site who doesn’t have pfs, I’m not thinking that way because I have ED and think no girl will want me and therefore my life is over. Something far more fundamental has occurred in my brain, like a paradigm shift. I often feel like an alien dropped on a planet in which I cannot metabolise the atmosphere, something like that. It is profoundly scary.

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Same. After 2 pills in 2011 I was left with permanent digestive problems I never connected. 0.25mg in 2017 gave me the extreme PFS I have now. If I’d continued any longer back then, I wonder if I’d ever have had the wonderful years I did.

On the plus side I very much expect that this will improve. Initially I couldn’t process at all in them and basically needed to be led around, then I would have about 2 minutes before I got completely derealised, but now I can go around them OK and do my shopping. That particular symptom is leagues better.

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I don’t think all of you realize that it’s not that easy avoiding finasteride.

You guys probably would’ve taken finasteride later on in life for BPH (enlarged prostate) cause most men get BPH as they age. Granted you wouldn’t have had your life ruined in your 20’s but eventually you would have. I started getting an enlarged prostate when I was 25 before I noticed I had hair loss. I just never went to the doctor about it, had I gone I would’ve been given some type of prostate drug that’s a either a 5AR1 or 5AR2 inhibitor and I would’ve gotten PFS that way instead of taking it a year later for hair loss.

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I finally plucked up the courage and told a close friend. His reaction was really positive, not what I expected. It was difficult to explain the full impact of pfs. It’s good though as it’s been such a burden having to pretend and so I’m hoping this will help me improve as maybe I won’t dwell on things so much. I’m hopefully going to tell another friend soon.

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Indeed it sounds like we share some symptoms. Another really weird one for me is looking in the mirror - my reflection seems completely distorted and distant - it creeps me out. My brain has a similar issues comprehending faces (like when I take a girl out) it’s so strange. It’s been 2.5 months for me so hoping it subsides at least a little bit.

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I am debating whether I should tell my supervisor I have PFS. I am massively under-performing for obvious reasons and I am running out of justifications for that. But I don’t want it to sound like an excuse. I am not expecting a different treatment or anything, as there are objective standards to be met and I will still bear all the consequences of my lack of productivity. I just want her to know I am not lazy, that’s all.

It is such a sensitive topic to talk about. You can easily talk about any disease but anything having to do with sexuality is a taboo in professional circles. Also I cannot just talk about PFS having neurological symptoms, which would be way easier. I have to explain there are psychological symptoms (inattention, lack of motivation, dysthymia, anhedonia) that are a direct consequence of lack of libido, as I firmly believe, which makes everything sound so prosaic…

Has anyone told any colleagues or supervisors about PFS and what has the reaction been?

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Sibelio, I haven’t told anybody like that about my condition, only friends and family, but amongst them the reactions have been extremely varied. A few have been very supportive, and God bless them, but I would say the most common reaction is initially expressing sympathy and then slowly, quietly distancing themselves. Then there’s one particular friend who seems to have gone into denial about it, everytime I bring it up he sort of rolls his eyes, half-listening, until I’m done talking, then lets me know, in so many words, he thinks I’m making it up, I’m delusional, an easy card to play since I have a history of poor mental health.

The funny thing is with many of these friends and family I could never have guessed in advance they would react the ways they have. Perhaps this comes from a lack of awareness on my part; still, what a poster said above rings true for me, it takes something like this to show you who your real friends are. Ironically, it’s the two people I considered my closest friends before who have reacted the most negatively. One is the person I mentioned above, the other seems to be going through what I would call a disgust-reaction, she’s put up a wall that doesn’t look to be coming down anytime soon.

And then there’s my parents. They’ve been combative. I can understand this more easily, because I’ve been expressing a lot of anger towards them since I realised that Isotretinoin is the cause of my sexual problems and possibly many of my mental problems all these years. Long story short, I went on the drug as a 14 year old, and I blame them for making that decision for me. Even though impotence was not on the listed side effects back then, the drug was still known to be very dangerous, strongly associated with suicide, depression and a host of chronic physical conditions, in light of which I think it was incredibly reckless of them to administer it to their physically healthy young child.

In the first few conversations, my dad expressed almost no sympathy, in fact he would get angry at me for being sad. He seemed to have this unshakeable faith in a medical solution, there “must” be one, in his words, and this apparently meant that I shouldn’t feel sad even for a second, I should “look forward”. Illustrative example: one night I was so overcome with rage that I started punching the pillow, my dad heard this (I was sleeping in my parents’ living room) and asked me what was going on, apparently non-plussed; I told him I was angry at the doctors (actually I used a different word but it’s not fit to type) who made me impotent and he immediately exclaimed, “you’re going to get over that!”

With my mum, it’s a bit different. She said she was sorry from the first conversation, but she would scream it at me so that it sounded more like “shut up”.

Conversations with both parents have tended to turn into shouting matches fairly rapidly.

Fortunately, things are shifting in our relationships, albeit slowly. We are in family counselling and that is helping us to work things through. My dad finally showed some sympathy towards me in the last session, it ended with him giving me a big hug. His manner was totally different from the moment he walked in the room, he was uncharacteristically quiet and sad, it seemed to be finally dawning on him. He talked about how he had read an article on BBC news about other people who claim to have been affected by Isotretinoin like I have; funny that it took him reading about a stranger’s suffering to finally begin noticing his own son has been suffering right in front of his eyes this whole time, but hey, I’ll take it.

Anyway, to finally bring this back around to your question, Sibelio, my experiences make me wonder whether, paradoxically, it’s the people closest to us who are likely to have the most violently negative reactions to our disclosures. With somebody who is a professional colleague there may be feelings of trust, affection, comradeship, but there is unlikely to be that same emotional entanglement, and so perhaps he/she will be able to take onboard what you say more dispassionately. Of course, there is still an element of unpredictability involved, as he/she might have all sorts of his/her own issues that rear up when you disclose and get in the way of him/her truly receiving. But as I said, most people I’ve told who aren’t super duper close with me, even if they haven’t had much of a capacity or desire for prolonged contact with me afterwards, have at least believed me and expressed sympathy.

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I haven’t told anybody that I currently work with but be careful. Once you tell them, you can’t take it back and if you share too many details then it will possibly seem very strange. I haven’t decided to do it yet, but if you’re looking to get a little bit of a break from work I would think it makes sense to tell them just enough so that you achieve what you want and nothing more. Definitely no need to mention sexual side effects or anything like that and if you do, then they will seriously wonder why you are sharing that info because it has nothing to do with your ability to work.

A vague neurological disorder or damage caused by a medication is more believable and would reasonably affect your ability to work. Just a thought.

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Have you thought about sending her one or more of the articles in mainstream media publications that give stories of real people having their lives ruined? I think when people see actual popular media stories it somehow makes things more believable to them, even as much as news media is 90% garbage. It’s still better than telling people you have something that some depressed people on an Internet forum say exists.

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Sorry, just deleted my post by mistake, here it is again:

I told my employer I have developed gut dysbiosis (which is effectively what Fin has done to my gut and has been talked about on the PFS forums), which explains the diet I am on and also accounts for the cognitive symptoms. You can provide them with information on it, or let them do their own research, but given that it is a chronic condition which can take many months to heal but is more easily understood / accepted in the medical community than PFS and does not involve sexual symtoms, I thought it would be easier and less embarrassing.

Other than that the only people I have spoken to are my parents.

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I would consider preparing something in advance. Keep it simple so folk can understand. It keeps you in control and avoids pouring your heart out that may make people uncomfortable. Perhaps only mention a few issues at first or a general statement. Gauge their response. That maybe enough for some, others may want to know more.

I don’t think its necessary to share it with friends and close people. It’s not gonna lead you anywhere, only can make things worse. And you will look odd.

It’s not necessary, but you shouldn’t feel like you can’t tell people if you would like to. If you had a good friend with this, you’d want to support them. I don’t think it’s a good idea to isolate isolate yourself, and inappropriate to tell others to do so.

Just my 2c.

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Shit advice.

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Doctors don’t even believe in such a thing. If you have any friends who do or are at least sympathetic to your suffering, hang on tight to them. As for me, I have no friends and I always disappoint my parents with new health problems one after another.

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it wasn’t advice, its just my point of view. Telling parents neither gonna make me feel better or fix situation. And as you said you would just disappoint parents, or worst case scenario they will tell its all in your head.

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