The Value of Connections
As a person who grew up with hypospadias, I know very well one of the most difficult parts of this condition is not the physical details of the structure of the urethra, but the fact that we often feel completely alone and isolated.
The feelings of secrecy and shame attached with differences in the genitals can be very overpowering and despite the reportedly high incidence rate only one time in all my years in hospitals did I ever meet another person with hypospadias... until I found HEA.
The huge feeling of relief in being able to safely chat with someone else online who knew exactly what I was talking about when I expressed my feelings and frustrations having grown up with HS was overwhelming. It was safe and anonymous, and perfect.
But then I wanted more. I actually wanted to meet another real live person with HS to make sure they really did exist, not just as an email address or online person but in real life. I was terrified but determined. I had no idea what to expect when I walked into the hotel in San Jose, California. Would I know who ‘they’ were? Would they have name tags? Would they have a “HS” or “ES” on their forehead? I didn’t know, but I was both scared and excited to find out.
I arrived and I saw them... people with hypospadias and epispadias!
They were real... and they were a lot like any other person... a lot like me. All different ages, shapes and sizes, cultural backgrounds. Truly diverse.
What did I think we would all look like? I don’t know. I had just never before met so many people like me. It was overwhelming. Immediately I felt like I was with friends or family.
As the conference progressed I listened to some speakers and then I attended sessions where we sat in a big circle and just talked, about having HS, about the pain growing up, about our fears.
We knew what the others were feeling, we knew exactly what it was like.
We nodded our heads, we laughed, we cried. I didn’t want to go back to my hotel room at the end of the day, I just wanted to stay with these great people every moment. It had taken me 37 years to find them and I was so relieved.
Since then, I had the pleasure of attending another conference in Norfolk, VA and it was a very similar experience, but this time I remembered many of the friends I’d met in San Jose.