How To Live With Hs?

I have had this condition for more than 8 yrs, I'm now 20. It's a tiring, frustrating, painful, and scary condition to live with. I never knew what I had until recently and knowing that there are other people that understand what I go through everyday is relieving. I always thought I was the only odd one out; that I was the only one who suffered from this. The only people that know of my condition are my mom and siblings, I can honestly say that they have been the most supporting people ever but its still not the same because they do not understand the pain I go through everyday. Honestly, I am so tired of this condition that I do not know how to go on with it. I'm afraid to let anyone close to me, I am very insecure, and of course with low self esteem. I'm afraid of never finding a significant other because of my HS, of never being able to be intimate, I'm afraid of my health getting worse, of being perpetually shy forever.It is difficult having to wake up every morning and go on through the day like nothing is wrong with me when in reality I have this consuming condition. I just want to know from all those who have had this condition for years, how has life been with HS? how did you tell your partner, family members, best friends, roommates, etc about your HS? any advice?
joaven joaven
18-21, F
2 Responses Dec 2, 2012


I have had this for 12 years now. I am 24 years now and I can relate to how you feel. I have it in my armpits, groin area and recent on my one of my boobs. Yes, it has been very painful and a challenging. My parents and family members have been very supportive and that helps a lot. I have consulted doctors in 3 countries but they all said the same thing. There is no cure to it. I have tried several medicines but honestly, its useless. I have stopped taking medicines now. I have had to miss some classes because its painful to walk and even move. I have had sleepless nights because the pain in my armpits would wake me up in the middle of the night and now allow me to go back to sleep but at the end of the day, I know complaining is not an option because it will only make me feel worse. We have to live with it and the sooner we accept it, the better for us. I don't let it bother me any more. It is just like another part of my life. My friends know that I have a disease that gross and is painful and those are boils under my armpits and groin area. I casually told my best friend a few years after I was diagnosed with it and he was just crazily mad at me for not telling him earlier. And now, he feels my pain and cries inside every time I tell him how painful it is. My 2 ex-boyfriends knew about it because I told them. Both of them were very compassionate and never let it bother the relationship. I guess it is actually a very good platform to see if they really like you/love you. True love will look past this and will cry with you. If he leaves you for this, you are better off without him. I am sure I have darker path ahead of me since it gets worse with time but I am keeping my hopes high and will never let this depress me. Its just not worth it :) So accept it as it is, life will be a lot easier. Love yourself and nothing else will matter :)

I feel your pain, literally. wish I could tell you it goes away. I wish I could tell you that there is some miracle cure which makes it stop. I truly wish I could, but that has not been my experience. I've had HS for over 25 years now. It has altered its severity over the years, but it always has come back. I've tried various steroids, antibiotic regimes, diet, surgery, herbal remedies each with varying degrees of success. But nothing for me has worked permanently. Although what has perhaps worked the best for me sounds very stupid, taping a potato wedge to the area overnight to help bring the boils to a head sooner. I guess in a way though I have been somewhat lucky in that my condition has eased over the years and now I only get outbreaks maybe once or twice a year.

I have been pretty open with others about my condition. Although I have had far more years than you to come to terms with it too. My way of thinking is that it is like any other disease. Everyone has scars of some sort, some hidden, some not so. What I've found is that if I am honest about it with those who matter to me, they do not treat me any differently. I certainly feel more comfortable around them when I no longer have to make an excuse to not do this or that because I am having a flair up at the moment.

I think I was 22 or so the first time I worked up the courage to tell the man I was dating about it. I dreaded what he would think or do. I fully expected him to reject me and I had even put together my own list of reasons why the relationship was doomed anyway. To my surprise, he sat there, listened, then asked a lot of questions, things like, how often does it happen, where were they, could he see them, how painful were they, what could he do to help me get through those times and perhaps the most telling, was that why I had been holding him at a distance. Until he asked that question, I never realized I was doing that to him. I wish I could say that I had a nice full happy love life with him, but an auto accident decided that was not to happen. It taught me though that it is well worth taking a risk to tell those who matter or may matter to me about it.