Keeping it secret

General Discussion
#1

How do y’all cope with keeping this a secret. Once i was one of the best football players of my team (not to brag). But since this i don’t run as fast, i’m not as strung and not as energetic/motivated.

Also did you lose friends cause of this? i did.

Everytime i go out i’m constantly acting like the person i was 1.5 years ago, constantly and its making me tired and after my crash this weekend i’m giving up. It’s too much at this point and i’d rather just “despawn”. Not commiting suicide, altough i am severely suicidal, but just escape this society until i’m better.

But,

Will i get better?

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#2

You can tell people about pfs and in all honestly I would even argue it’s better because you might have a couple of close friends who end up listening/being there for you.

I have a couple of close friends that Keep up with how I’m doing and I talk to them about my pfs. They’ll never really understand how cruel pfs really is though unless they experience it themselves.

I’ve withdrawn from society in general though ever since pfs. It’s just too much for me.

3 Likes
#3

“Why would you keep it secret?” Is a question that is worth asking.

If you were hit by a car, you wouldn’t walk around with a broken arm or leg saying “it’s OK, I’m just a bit tired today”

If a friend of yours had said “I took a drug and it seems to have really hurt me” you’d hardly have laughed at them and given them a hard time. You’d want to support them. They are your friend after all.

If they acted weird for a few years and you eventually just lost touch you might wonder what happened, but you might just think you drifted apart.

You probably don’t want your friends to do eventually disappear.

If you’re worried about specific symptoms, then don’t mention them. We have people here who have some symptoms but not others. You don’t have to reveal everything if you don’t want to. But your friends would be shitty friends if they thought any of our symptoms weren’t worthy of compassion.

Maybe pick carefully who you talk to, and maybe pick what you feel comfortable talking about but you will very likely feel better with a friend or two in your corner.

5 Likes
#4

I would agree with @Toughluck24 and @Greek - telling my close friends about PFS was the best thing I ever did. I hid it from everyone except my family for almost 7 years and it was fucking exhausting. A constant act that drained what little energy I had. Trying to fit into societal norms (getting a good job, pretending I was “advancing” my position in life, etc) just drained me.

One of the problems we have with this disease is that because it’s so heavily stigmatised, we are an incredibly anonymous patient community. This leads to inaction on the regulatory and research fronts, which leads to dismissal of the disease by clinicians and others, which allows this cycle to continue. Speaking up is an incredibly powerful, but simple, action that any patient can take. If not publicly, then at least to your close friends.

If you choose to do so, come prepared. Bring the medical literature, share other patient’s stories and calmly talk through what has happened to you. Don’t theorise about what it is or why, just explain your story and then discuss what has been found in the medical literature at a very high level. By showing them other stories, you also show that this isn’t just you, or that you’re delusional. My story is one of those you can share, and I can assure you that I am not delusional :smiley:

I’ve also connected with families of other patients on their behalf, when the situation is difficult to explain. That’s something I’m happy to do for any patient - to explain to their loved ones that unfortunately they are suffering from a severe and complex medical problem and need their support.

5 Likes
#5

I really should be careful cause you know what’s the problem in my country (The Netherlands)? Teenager like to make fun of you, unless you’re the cool guy. I’m not the cool guy, in fact i have a reputation of being the funny, clown kid. People really liked me pure because of my humor. I’m not funny anymore. I became a never smiling, antisocial boy.

The special kid turned out to be the “special” kid

1 Like
#6

You said it totally right, we’re anonymous and have a horrible disease that gets denied to exist by scientists.

#7

You’ve been chemical damaged there’s nothing to hide.

#8

So dear @Veron this is a creazy comment. I know the Netherlands well, I life near the dutch border. I know the old coffeeshops, Amsterdam, but all the other Cities too.

I told it much friends. Every body know s it.That the cock of the Exsexgod hangs now. I hide myself in my bed. I took the pills by myself. I cannot forgive me that forever. I had have put the fucking pill packages from the ugly Urologist to the trash :wastebasket: basket.
So I hang up in bed and want to see no one as a protest against myself. Me the greatest fool of the world. Taking this poison, without checking the internet.

Get more and more weird about it all. I’m weird in my brain. Everything in my entire body and brain was damaged from Finasterid.:scream: And my soul has been violated all the time since April 2021.

2 Likes
#9

The human body is designed to heal itsself my Fri nd, but it won’t do that if you keep consuming plants

#10

I have heard that marijuana is good for the mental and neurological healing process. But the new grad brands are so strong, that it burns away every receptor.

#11

I’ve never discussed it with anyone but a few doctors who were very dismissive about it. Doesn’t do any good to try to explain to people why I have changed, they wouldn’t understand. Yes I’ve also lost friends due to PFS. Don’t party much anymore so those friends have moved on. Lot’s of people don’t talk about their medical conditions, depression, anxiety, physical ailments, even cancer. If someone doesn’t want to talk about what’s ailing them I always figure it’s best to mind my own business. Same goes with me not talking about PFS.

#12

Yes bro, you sound very similar to what I went through soccer and socialising. Very similar. Like night and day