Hope

I've been diagnosed with HS now for 11 years but in all 15 to17 years. I just went and had to have a boil lanced open that had me confined to my bed and only able to lay or lean on my left side. The pain of these things are so miserable and horrible and how us people with HS deal with the pain and that comes with it ill never understand how we do it but we do. You tend to start pushing people away cause of the insecurities and when you do visit with family or friends all you can think about is please don't leak onto something from a boil that's still draining after months of being cut open or praying to God that no one can smell it. Not all bandages help in covering up what your scare of. Black clothing becomes your favorite color ONLY cause you can hide a leak or lump from the world seeing it and hoping for a good day of no pain and no leaks. For me I love the outdoors but I'm always stuck inside where I can cool and not worry about sweating cause if I sweat I'm down and not able to be apart of any of my families functions. You even lose family cause they don't understand why you aren't at their weddings or baby showers or family BBQs because you are stuck to a ball with a chain that you have no umph to try and move anymore cause your just so drained from lack of sleep. You can never sit comfortably anymore cause there is always sore spots that you will have forever till they can hopefully find a cure in the future. Autoimmune diseases will always be a silent killer. Speaking out about HS also tends to make people think your a nasty person when you're probably cleaner than they are cause your already showering multiple times a day and buying expensive soaps or shower gels cause you read about it on someone else's page and decided I'll buy it and try and if I get get same results and get to face no pain or slowing down the welcoming committee of boils. I've lost a lot of friends and family cause they just will never understand the true HS situation without having it themselves.