I know I have answered this but cannot find my reply. One of the worst things is that the condition is progressive and aggressive. Mine stayed in only my groin for 27 years and then after a great period of stress moved to my breasts. It affects all areas of ones life. Many doctors don't have knowledge of the condition. I have been told that it would go away after menopause, but I had a hysterectomy at age 47 and h.s. was still there. I was lucky in that mine was diagnosed early at the age of 28. I am 58 now. Many friends and people that don't have it, truly do not understand the extremity of the condition and that you have to learn to love yourself and provide the rest and special care that the disease requires.

I find is the length of time it takes to heal!

The unknown. Not knowing when I'm gonna have a flare up. Not knowing if I will ever be able to be in a relationship again. Not knowing if it will ever clear up. Not knowing if they will ever find a cure! The unknown is definitely the most challenging part!

Not being able to have a relationship & share my diagnosis fear of rejection all due to miseducation of HS.😔

The invisibility of the disease.