I kept the secret of having HS for most of my life. I was diagnosed around 12. So it was something I kept very secret due to the fear of being teased by my peers throughout school. Even in college I kept it a secret. I started telling people about HS when I was 22. It started getting really bad when I was 22, so I had to just tell people. Some people are a lot more receptive and supportive than I thought they would be. Most people that mean anything to me know that I have this disease now and it seems to make things easier on me.

I just went through a skin graft surgery last Thursday. Everyone that knows has been more than supportive. I have a great team. I hope that you can find the strength to explain to people around you that this is something that is a part of you and they will just have to accept it. Good luck to you. If you want to know more about surgery, I would be happy to discuss it with you.

Yea I'm just now telling people, and if it gets to the point I have to tell a employer they always want to see it... I will quit or break up a friendship before I show anyone who isn't a doctor.
People ask why I wear 2 or 3 shirts in the summer and long sleeves and never wear light colors, I just tell them it's my preference. Humans I think have an instinctual reaction to huge open sores that ooze infection (mine 11 months a year and the size of a golf ball) and it's never good. They think your contagious and that they might catch it but it's genetic.
I've started telling people because they are openly against Obamacare.

"Damaged Not Broken" I love that, because it just sums up me!
I haven't told my family or friends about my HS, and it's something I have to deal with everyday. The mental part of HS really sucks, the shame I feel towards my own body is not healthy.
I have the most amazing friends and family and I know if they knew about my HS they'd take me to any doctor around the world just to help me out. I don't tell them about my HS because they can't do anything about it! They would worry and feel bad and it would just make me feel bad.
When I'm older I will probably tel them, but not right now when I'm still living with my family. I'm 22y/o and I want my family to see me as a normal active person that I am, I don't want them to see me as a sick person and feel sorry for me, or not ask me for certain things.
When we moved to our new house, I had to lift heavy things and I ripped a sore open and just went into the washroom... cried from the pain... fixed my makeup and continued moving. If my family knew about my HS I wouldn't of had to be in a situation like that =(

xoEsmee

I don't regret telling people. In fact, I feel a lot better since I have came clean about my HS. It's like a big sigh of relief to know that I no longer have this big secret.

Since I have came clean to my friends, I have came to find out that my best friend's mother has this problem as well. I'm glad that I decided to share my story with her because she was able to finally open up to someone who knows first hand what it's like.

Sharing your story will help fellow sufferers of HS not just by reminding them they aren't alone but also raising awareness about HS. It's not as uncommon as you might think.

I guess it is easier said than done. I have a good support system of family and friends that remind be there is nothing to be shamed of. I understand that not everyone has that.