I've had HS for 16 years. I know exactly what you are talking about. I lived in the closet with HS this whole time until this year. I mean people knew like my ex boyfriend and my parents, but not just anybody looking at me. But now for some reason, I have come out of the closet. So when I was working for this lady just a couple weeks ago..I got a cyst on the way to house that was ho and bad and mde it hard to walk without a limp. The kind where you hold the wall and gringe in pain everytime you move,...well I told her..and she said ...oh okay...well I hope you feel better. That was kind of surprising because she is that very shallow..I have to look gorgeous all the time types..the barbie girl in the barbie world.

I feel like this, the more people that know..then the better. Then pretty sound we will be out there..like the flu for God's sakes intead of being this mistery quiet disease that Friggin' DOCTORS don't even know about!

Maybe if you told them they will have compassion for you.

Thanks for the advice. I have been a little more open with people about it. Having this support group really makes it easier to talk about it. Thanks again!

My strategy is blunt and to the point. Employers and family members too will seem to forget after a time and when an explanation is required I usually say something like this "I have a terminal skin disease that causes me to get boils all over my but and groin area and they constantly drain a disgusting discharge. I am having a flare right now and feel like my entire body is fighting off the flu....that is why I couldn't make it to work or the family event or whatever."

This is blunt but the look of surprise and shock on their face is priceless. And if they have heard my spill before they usually admit that they just forgot and apologize to me. I hate it though when people start giving me medical suggestions as if I haven't tried every available avenue already, lol

I too just tell them about it. I found that if my employer did not know and i was calling in they looked at me like I was a problem child. After explaining what was going on and letting them know about the disease, they are a lot more willing to help me and work around my issues.

My family I just plain showed them lol I think until you see it you dont really grasp what I am really going thru. Anyway its nothing you can control or stop so people may as well know about it because it eventually affects your life in some aspect at least they may sympathize and not be so angry for you bailing on whatever oppotunity you are missing.

Lol..I like DustBuckets reply..it's real clear.

I totally know what you mean about hating it when people that don't know shit about it give advice like that know. My Aunt told me a few weeks ago..it's because I'm fat. That if I lost weight I wouldn't have this disease anymore. Yeah tell that to all of the skinny people on this site with the disease.

Dustbucket: I love that advice! I may try that!

Not a dumb question, at all. I too, did not know what to tell people about why I was limping or why I'm not able to attend LIFE. After almost 30 years of not telling anyone I found it really hard to do. But I do agree if we don't speak up "who will"? Thanks to the wonderful support of this group and knowing that I'm not alone (it's a disease), I am becoming very bold about telling my story. Most people are very sympathetic and supportive. Almost everyone has compassionately suggested something...a condition it could be instead of HS, a doctor they know, a remedy that I should try. {They mean well}. Then there are always the "rude ones" with if you lose weight or if you shower more maybe it would go away.

After you tell a few people it becomes easier. Even though it is still very embarrasing, it is a part of you and most people are very understanding.

I always tell people the truth. If someone asks me what I have, I tell them, gross details and all. LOL! It is an illness, disease, etc just like any other and we should not be ashamed for having it. It is not our fault. My employer knows all about it and I have even shown them pics and stuff. My entire family knows about it and I show them if they want to see it too. I am not embarrased at all because its not my fault that I have it and thats that. People who dont have this have no idea what we go through, so that can't and should not judge. I hope this helps you. Hugs!!!!

I always have to reiterate it because employers and even family will forget with time. So i'm used to giving reminders now. This thing is long term and people do not think 'chronically' like that. But it is what it is...thank God for you people!