How do I open up to people about this? A post about the shame associated with it

[Cmq24]

Hello all. This is my first post-- have been meaning to do this for awhile. I guess I should start by sending my heart out to all who are dealing with this disease.
As I'm sure is the case for many of you, this disease has literally derailed my life. I am 24 years old, and found out about the peyronies about 2 years ago (although it feels like a lifetime ago). My heart especially goes out to those with extreme cases-- I have been lucky enough to have a more moderate case. I'm not sure how many degrees my upwards curvature is, but the disease has definitely shortened and lessened the girth of my penis. It also caused severe erectile issues. I started taking cialis, which helps, but I still have pain when I get full erections. To be honest, though, the psychological effects have far outweighed the physical for me.
 Before, I was outgoing, confident, and a very open person ( although sometimes I start doubting who I even used to be). Once I found out what was happening, I pretty much lost my mind. Of course the peyronies was all I could think about, but I was too ashamed to tell anyone what was basically consuming my thoughts . As I'm sure many of you were, I was terrified, overwhelmed, and worst of all, alone  in dealing with it. The disease became the elephant in the room, at least for me, that I couldn't talk to anyone about. I became severely anxious, and stopped enjoying-- even feared-- social situations. The anxiety over my condition consumed me, and Internalizing my thoughts over it was literally driving me insane. I was pretending to be ok to everyone I knew, because I was too ashamed to tell anyone what was going on. The anxiety spawned a severe depression, and I basically receded from all of my friends. Ironically, the only person I stayed close with was my girlfriend, who I am lucky enough to still be with. The social anxiety and depression took on a life of their own, and 2 years later, I am out of touch with every friend I've ever had.
 Over the past 2 years, I have spent a lot of time coming to terms with the peyronies. The hardest part now is trying to re-integrate myself back into a normal social life.  I have thought about telling some of my friends what happened, but where do you start? "My dick broke and it drove me insane?" The psychological effects are so complex and intense that it seems impossible to relate to someone who hasn't gone through it what it's like. It has been such a long, dark, and lonely journey that no one I know, besides my girlfriend (who I told about the condition about a year ago), has been with me on. I feel like a completely different person. And now, when I do see any of my friends, there really is this elephant in the room. Basically, people are wondering, "what the F~@< happened to you?" "Where have you been?" And, up to this point, I haven't had the ability to answer those questions or fill in that void.
So I guess, in short, the hardest part of the  disease for me has been the shame associated with it. With almost anything else, you can talk to people about what you're dealing with, and use them for support. Talking about this is so difficult because almost no one even understands the disease, let alone it's potentially horrific psychological effects. And, again, for me, it became about so much more than just the peyronies. So telling someone that "my dick broke" , to  put it bluntly, doesn't begin to explain the psychological journey I've been through for the past 2 years. And, of course, telling someone that your dick broke isn't the most comfortable thing to  talk about.
 Sorry for the length of the post, but I wanted to fully explain the journey I've been through, and just simply vent. I hope that others find some common ground and solace in this post-- I know that that's what this forum has done for me so  far. If you do see this post and relate to it, please feel free to message me to talk about it. Or if you have opened up to people about it, please feel free to respond to this post and offer some advice. It really does help to hear other's stories and learn that you're not alone-- that your reaction to something like this is normal. Because the hardest part of this entire journey has been how alone I have been in dealing with it-- although much of that is my own fault. For those who do read this, you are not alone, and this forum is an essential source of support. Please use it, as I will try to do. My heart, thoughts, and prayers go out to all of you.
 

[welshwales]

Hi there cmq,
I, as I am sure many others will, very much understand what you have been going through. Peyronies Disease can be like an emotional brick wall that stands between you and those you care about. For me it was feeling that I couldn't tell my parents, with whom I am very close. They knew something was wrong, and my denial and lies that everything was fine caused an emotional impediment, an elephant in the room as you put it. So if you want to regain their trust, you need to tell them something. I told my parents everything, and they have been incredibly supportive and understanding. But that doesn't mean it is the right line to take for everyone. You could simply tell your friends that you have been experiencing emotional/psychological difficulties, and that you needed time and space to figure out and come to terms with your difficulties, and you now feel ready to re-establish contact with your friends.
Have you thought about seeing a therapist?

[Caesar]

Hi Cmq24.

I can relate completely to you: I'm 32 years old, 11 months with this disease. Very much of what you've told, I've felt it. Although my Peyronie's started months after I broke up with a very long run girlfriend and I've had to face it alone. Could you imagine going trough all this with the added problem of a very low self-confidence and self-steem needed to start a new relationship with a new woman?

Maybe because I was desperated or because our society here in southern Spain is so open-minded, I took the risk and started to tell, little by little, to my few closest friends what was happening to me. And know what? Not a single person made me feel bad, nor ashamed, nor guilty. All I received back was support, empathy and different points of view that helped me being more optimistic.

A shared journey is a better journey. And you cannot imagine how much relief I find in openly tell my worries and sorrows to those I care. Besides, you don't need to go telling everyone, just your best friends. Take the risk!
A true friend should and will understand. As it has happened in my case.

You seem to be a nice guy. I'm sure there are some friends out there good enough to show you how much they care about you. What's more, when some people learn about your most private problems, they feel special and closer to you and open up about themselves. And that's a wonderful feeling.

You say that much of how alone you've been has been your own fault. Come on! Be easy on yourself, man. Self-compassion is also a virtue.

[LWillisjr]

I understand it weighs on your mind. But you are not obligated to tell everyone the details. You could just say you have been dealing with a medical issue and you don't care to discuss it. How much and what you say is up to you and you alone.

And you can overcome this, there are many success stories. None of us want this, but there are ways to deal with it.

[this_day]

Cmq24, i know exactly what you're going through.  that dark, lonely road you talk about gets brighter, trust me!  this condition (which has changed you), will eventually mold you into a better and different person.  you may not have the answers right now, but eventually it will all make sense.  hold onto your faith and enjoy what you can while you can, don't let this consume you.  you have your girlfriend by your side for support.  best of luck

[NeoV]

My Peyronie's started at 24, and ruined me for several years psychologically.

It may make your social issues worse, but oddly enough if you try to be social and to be positive you may actually end up being more positive than someone without the disease, since he has no motive to push himself in that direction.

Eckhart Tolle gives the example of how someone who has injured their spine in a car accident will be forced to have flawless posture in order to avoid re-injury. Ironically it is he who will have better posture than everyone else. Another one I heard from Owen Cook was comparing someone with social insecurities to operating a complex car. The car is much more complex than the car other people have, but if you can learn to master it, it will be better than the others. Men with Peyronie's will be more attuned to pleasing a woman sexually and emotionally. A member here was told by his girlfriend that sex feels better now that he has the disease, since he's paying much more attention to detail.

Peyronie's really drove me into the wall, it will force you to hit rock bottom and not a lot of guys get to do that. I've stated it before but most guys remain in limbo.

Hitting rock bottom can be a huge positive. I tend to notice that now days I see no real alternative than to be positive. Going "deep" and into my old ways of thinking WITH this disease is simply too dark, or rather it does not even compute. I think that's whats so powerful about failing in life or facing your ultimate demon, you find that your emotions cannot even calculate it the way you expected. You can learn to own your own psychology, or you can live in some kind of sadness that is no longer measurable. The latter isn't really possible any more.

[Cal30]

Cmq,

Thanks for posting. All of us who have posted can relate to the darkness that you've experienced.

To address your original question of "how to open up to people," the obvious answer that I'm sure you already know is that you just do it. You open up to them and tell them. - You'll have to trust your own discernment on who to share with and how much to tell them.

One of the people I was afraid to tell for years was my dad. One day I finally summed up the courage to tell him, and I wrote him a short email explaining that I had peyronie's and ED. It was a fairly short email, but one of the things I expressed to him was that the hardest part about the whole thing was feeling like less of a man. His response was really helpful. He sympathized with what a difficult problem I had and admonished me not to be ashamed. He wrote something like "there is no need to be ashamed. You didn't chose to have this problem, it chose you."

I realized he was right. I'd never marched down to a clinic and signed up for peyronie's and ED. They happened to me. Why should I be ashamed of something that happened to me?

Even though you didn't ask it out right in your subject line, I feel like you're looking for some pointers on overcoming the abyss of endless psychological darkness that this affliction can cause a man.

Seek Out Community and Support
You're already doing something that will help you deal with the darkness. You're talking to good safe people who can offer you support and practical advice.

When you talk to good safe people, they can sometimes offer input that helps you reframe how you think about the whole thing. As NeoV and other posters have written, the paradox of these diseases (peyronie's and ED) are that they can make you or break you. They can make you a better and stronger man if you let them, or they can take everything you have and destroy you. By posting here you're taking a step toward strength, power, hope, light and mental health and away from darkness, despair, hopelessness and powerlessness.

Also, I feel like there is another underlying question in your post about what to do about your old friends. I sense you're feeling some guilt about having "dropped the ball" in the relationship by withdrawing. That is understandable. (I've gone through exactly the same thing with some of my friends.)

Basically there are two separate issues here that interconnected to form a negative outcome: your peyronie's/ED and your withdrawal from friendships.

You withdrew from the friendships out of overwhelming shame and fear. You were thrown a very difficult hand and you didn't know how to handle it.

This might sound harsh, but I think some of the guilt you're feeling is healthy and right. You let yourself become emotionally incapacitated. You withdrew from meaningful relationships, not only depriving yourself of all the positive things you could have gotten from your friends, but also depriving them of all the positive things they could have gotten from you. You robbed them of you, and you robbed yourself of them. If you didn't feel bad about that, then I would really worry about you. Your guilt is actually a good sign in that it shows that you're waking up to just how unhealthy of a social situation you've set up for yourself.

That being said, don't wallow in the guilt. Let it do it's job and motivate you to change!

You don't necessarily have to explain everything to everyone. In fact, there may be some friends who you can just pick up where you left off with and start the friendship running again. Give'em a call and say "hey let's go fishing" or "hey I'm having a bbq this weekend," or whatever. That may be all you need to do get things back on track. Focus on making sure they're taken care of, and they have a good time, and you'll be blessed.

So go and reconnect and turn that guilt into positive motivation to re-establish old connections, make new connections and maintain all the connections you can that are good and meaningful, and keep writing to us, your brothers, to let us know how it is going with you!

My hope and prayers are with you, Cmq!