Hello, my name is Brandi. I’m a 31 year old woman living with HS Disease. This condition has caused my pain threshold to rise a great deal. You live in constant pain, but after a while either your body, or mind, develop ways to filter it out.
This is my story….
I began having HS symptoms at 14, and they got really bad around the age of 16. I was still a virgin, and my family Doctor said I had herpes. My parents were so mad at me, thinking I was sexually active and lying about it. My mom even took me to Planned Parenthood to get me on the pill. It was only after my first gynaecological exam when the doctor discovered I still had my hymen that they began to believe me, but my family doctor still insisted it was herpes.
Through most of my formative teenage years and young adulthood I thought I had herpes because that’s what my doctors had told me. I went to college thinking that I had an STD and could never have a normal sex life, and I was partially right. It wasn’t until I was 28 and I was sent to infectious diseases because of a really nasty outbreak, that I received my HS diagnosis; and I was pissed!
At that point I had gone nearly half my life thinking I was living with this nasty STD. No one, not one person from all the doctors I had seen during that time had thought to question it. I was glad that I didn’t have an STD, but it didn’t change the fact that I was still living with a condition and there wasn’t much that could be done for it. Thinking I had an STD almost half my life was hard. I couldn’t date or tell anyone about it; it was always this dirty secret. To find out I didn’t really have an STD after all made me angry. Now it’s not so much that people think I am promiscuous as people think I have the plague. Things really haven’t changed much in the sense that people still judge me negatively.
I’m not able to work anymore because of how bad my boils get. They pop unexpectedly, making it hard to wear underwear let alone work in a hot facility. In the past I’ve done everything from being a cashier to working with kids.
I’ve gotten used to the pain by this point, and it’s only when a lesion gets really big and pops that I notice it anymore. I recall the first time I had a medium sized lesion, I thought the pain was going to kill me. I received pain killers after going to the ER to get it lanced. Now, medium sized ones are nothing at all. Currently, I’m between stages 2 and 3. Some months my skin clears up enough that I am a solid 2, but sometimes I break out so bad that I’m on the verge of 3.
Embarrassment is a big challenge when dealing with HS Disease. You will suddenly have one pop in public and the gauze or bandage you have on doesn’t contain the sudden flow. Next thing you know you have blood all over your shirt and people are asking if you need medical attention.
I also have problems dating. I’ve secluded myself away from the world and dating is just a part of that. How do you tell someone you want to be physical with them when you have these boils that could pop at any moment, or that you have sores that need to be avoided down there?
People look at you like you have the plague and avoid you.
Then there is the smell.
God the smell is probably the worst. Once you have one break and you are bandaging it sometimes the smell of puss or blood just follows you everywhere. It takes a toll on you mentally and there have been more than a few times that I’ve thought of suicide.
There are a few things I use to help manage my HS. The first is putting Vicks on the sores to get them to come to a head and pop. Also, I use panty liners for bandaging. They are honestly the best when it comes to sudden popping since they absorb the most fluid quicker than a normal gauze Band-Aid. Iodine and coconut oil are good so that the ones that have popped won’t get infected. I use the iodine on open sores that have already popped and are still seeping. The coconut oil you can use on the scaring and on the little ones after they pop.
The idea is that it is a natural disinfectant, and it softens the skin so that there is less scaring and the little ones will heal faster. I check every day and pop the small ones so that they don’t grow any bigger. Plus I add rubbing alcohol to my washing routine, and I take a bleach bath at least once a week.
If I could grant a person newly diagnosed with HS a wish for their future, it would be for a cure. I know my life would be very different without this disease. I would be able to go out in public without having to worry about one of my boils popping or having people comment on the smell. It would be possible to have a normal dating life, and I wouldn’t have contemplated suicide when it got really bad. I also wouldn’t be so afraid of going swimming in public and I would be able to have a job and support myself.