Hello. I am Bri and I have had HS for over 13 years. I was diagnosed at 17 and put on antibiotics which didnt help and since then I have been trying to manage it on my own.
Firstly I would like to say thank you to the people who have posted their stories. The shame associated with this disease means so many of us suffer in silence feeling like we are the only one in the world who has this problem. Whilst I wouldnt wish this affliction upon anyone it is really comforting to know that I am not alone.
I am 26 years old and currently half way through my Diploma of Beauty Therapy. Doing this course has completely changed my relationship with my skin and I would like to share this victory with you in hopes it will support you in yours.
The diagnosis for me like many of you was not a relief. I was told there was no cure and that life long antibiotics and surgeries were my only option. The antibiotics had barely any effect and I was shattered. I suffered in silent self loathing for years, covering myself up in every way I could, terrified people would find out about my 'dirty' secret. That all changed when I began my course and was forced to confront the reality a decade of infection and scars had wreaked upon my body.
At beauty school the way you begin to learn is to practice techniques on each other. It is expected you would receive all treatments you will eventually be performing on your future clients, including waxing and body massage. I had no choice, I had to tell my lecturers about it. It was one of the scariest things I have ever done, but I took my lecturer aside and showed her my shame. I was not prepared for her reaction. She was sympathetic, and in no way was she disgusted or condescending. She inspected my cysts and scars and immediately began suggesting ways in which I could be helped.
Let me say that again. Ways in which I could be HELPED!
I had never been told there were options like this before! She also assured me that I would not have to share this information with anyone else in the class if I didnt want to. Well this made me a bit braver, and I started sharing my secret with other girls in the class. Every time I prepared myself for their revulsion but it never came. This made me realise that my skin was not something I should be ashamed of. I have a painful and unsightly condition and that is not my fault. I am not disgusting and I am not beyond help.
My honesty encouraged others to be honest with me about their imperfections and I realised that as a beauty therapist, this is what I would be dealing with every day. People with imperfections. As a result of my HS, I have a unique perspective on skin and it is the part of beauty therapy I am most passionate about. I have the knowledge now to approach my condition with understanding and for the first time ever, hope.
I will create another post detailing what I now know about HS and the things I have found that do and do not work. This post is about how I begin to heal, both mentally and physically. You can be beautiful and have HS. You can have HS and not live in fear and shame. It is now my mission to bring this message of hope and understanding to all those too scared or despondent to seek solutions to their afflictions. I owe a deep debt of gratitude to my lecturers and fellow students and I thank you all for helping me break free of my HS prison
Written by
Tookibri
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That is wonderful they were so understanding and wanting to help!! I truly wish more people would be like them. It is a sickness just like all the others but for some reason people think it something you did or doing!! I'm glad your in school I was a nurse but cause of HS I am disabled. So enjoy every minute being able to work and out there with people and helping others😀. Thanks for your post and if you find anything that helps I would love to hear about it!!!
You were very lucky to have had a good dr ive had these for 20-25yrs seen many drs but only yesterday at aged 41 diagnosed with h.s and ive seen many drs it was a nurse that told me about5yrs ago aswell as my mum this is what it could be,however due to my bad health with sore legs and trouble walking and meds i went from a size8-16 height 5ft7 point to this is i moved surgeries and the attitude of some drs unreal my current dr thinks its lupoma lumps just some fatty tissue,i told her well these lumps i want checked my husband died of massive heart attack 3yrs ago and im only parent my kids have im it the only one my yougest is ten (16yrols)was sitting with me she couldn't argue about that one i told her i want my health sorted,my husband was 42,so it turns out the lump she also felt on my back is NOT part of the h.s the dermatologist says
Wow this is amazing!! Such an inspiration! I've always known it's not my fault but when you don't have the courage to talk about it you become trapped in thinking of it as dirty and shameful! I used to have to shower twice a day when they got really bad and started weeping, I felt like I smelt of rotting flesh and that surely others would smell it too.
I'm about to go and see if you did post the other post about ways you've been helped to deal with it, I would be really interested because the antibiotics have ruined my immune system and I still have lesions!! There's so little out there on ways to deal with this that don't involve harsh drugs or chemicals or surgery!
Great story, thank you! I'm a guy, and didn't have this until I had a kidney transplant and then a virus in the kidney after only 6 months (the kidney isn't 100%, but thankfully still works). I went on a medication and an IV every two weeks for about a year. It was during this time that I started to get what I can't anything else but acne to call. It was really bad on my face, chest, back, and some in my groin. Those were determined to be nothing more than cysts filled with dead skin, oil, etc. After that though I was diagnosed with HS in my armpits and groin.
My HS isn't as bad as some I've read. I get the ones that swell up and "weep" with the smelly puss, oh yeah, and I felt the same way that people could smell it, though unlikely they ever did, but I sure could.
I would see my dermatologist when I had a nasty flair and would go through numbing, cutting and draining, and then steroid shots to calm the inflammation. I swear, at times I felt like I was getting 30-40 shots. So flipping painful, irrelevant if it was in my armpit or in my groin, just more embarrassing when they have to be drained and cut in the sensitive area.
Oddly enough, they have been kind of quiet since July. I had foot surgery and went off accutane, which I was on for the acne/cysts. Most of the ones in my armpits that did become irritated I was able to take care of with squeezing them. Luckily they would go right down and calm down. I unfortunately have one in my groin that I need to get done this afternoon at my dermatologist, it is terribly painful.
All I do, at the moment, is wash daily with hibiclens and then I use Aczone that was prescribed by my dermatologist, and it has worked, to a point.
I've heard about Humira, but because of the virus in my kidney and staying very low on my immunosupressents, I can't try it.
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