My name is Kiley, and i suffer from HS.
I want to talk about this for several reasons, there’s very little known about this chronic disease, it is to me anyway; an invisible disease. Though i may look normal and healthy, people outside can’t know the pain and suffering i go through due to this disease.
Hidradenitis Suppurativa is a long-term chronic inflammatory disease, The cause is not well understood nor researched. It characterizes it’s self with recurrent boil-like lumps that become larger and turn into an abscess, which in turn burst open leaking pus and become difficult to heal leaving scarring in the infected area.
I want you to imagine what it was like when you had the worst break out you have ever had. Got it? Now multiply that by 10 and place it under your arm, your inner thigh, groin. Now imagine if that went on for weeks and months at a time, with and if you are lucky, a week or two of respite in between each flare up.
Now imagine going to your doctor with this. And being told there is no cure.
You feel hopeless, you feel like you have been failed. You feel embarrassed.
My experiences with HS, particularly in the last few years has had a detrimental effect on my life.
This disease is probably one of the worst (IMHO) that anyone could be inflicted with. Skin wise. You are living with chronic pain, Debilitating pain. I mostly suffer from HS under my arms, and in between my thighs where the skin touches. I’m talking you either can’t put pants on, or you can’t lift your arms to get a shirt on. Pain.
It has a massive impact on your mental health, you feel absolutely horrible, you suffer from malaise, you have to endure the mammoth effort of slapping on a happy face and getting on with your day.
For myself last year, just before i began study, i had a pretty bad flare up. Which puts into question my ability to be able to get to and complete classes, now luckily for me it subsided just before classes began, only to reappear two weeks later. I’m an art student, so having mobility in my arms is necessary especially when you are lifting your arms up to sketch using an easel. Last year was intense, the flare up’s happened a lot more often and were much more severe than i had previously dealt with.
I began having to skip classes because i couldn’t get myself dressed, because i couldn’t lift my arm to brush my hair let alone anything else. Which to some isn’t a big deal, but for me it was absolutely awful.
Now i had been suffering with it for some time before this, so of course i had been put on several different antibiotics, some of which did ease the lump, but essentially didn’t do anything. I was put on a different course of antibiotics every other week; this has been going on for years.
Last year was the first time i had to be lanced, After a flare up i had a lump about the size of my palm under my left arm. Now if i had of done my research before this i would advise against it. The actual lancing it’s self is absolutely horrible. You are to be injected with a local in the site. This was incredibly painful, it literally felt like someone was running a hot butter knife into an already tender area. I wasn’t told much about the procedure at all.
After being lanced, the trip home from the doctors was okay. A few minutes after returning home the pain kicked in, and my gosh it was terrible. The tears came, the frustration of having to deal with this horrible disease, knowing that this wouldn’t be the end of it and having to accept that there will be another flare up in the future. Became a little too much for me.
I had already been dealing with HS for years now. Without even so much as a sign of hope that i can get through a month without a flare up.
What they didn’t tell me about being lanced was the packing procedure. For those of you who don’t know what this is, it’s taking where they pack the open wound with gauze, essentially to soak up all the junk that was in the abscess. You have to do this every day. The first day was the worst, almost as bad as having the actual procedure performed. This goes on everyday for two weeks, though it got easier after that.
The only down side of this is that my wound was not packed properly. For the next three months at the lance site i would have constant infections, and could still feel that there was junk under the skin.
During this time, i was trying my best to get all of my Uni work done, and this is something that still bothers me to this day. I had explained to my teacher about my disease, he had taken the time to google it, and while reading it and i quote “This is a disease i am making up to get out of work”. This is a prime example of what i mean when i say, That HS is an invisible disease.
This year, i have already had a severe flare up under that same arm. Which is why i say lancing is not effective. This most recent flare up was about the size of my palm, and incredibly painful, after my last experience with getting lanced, i want to avoid it until it is absolutely necessary.
Having said that, my road of trying every single antibiotic under the sun is running short, with surgery looking like the only option to give me relief from this condition, which doesn’t even come with a guarantee that it works.
It is essentially like a merry go round of pain with intermission periods that last a few days to a week.
I want to touch on how it’s affected my life.
What i find most often when i talk about my disease, is that people down grade it to something like getting a single pimple, or a boil. Oh it’s just a spot, i’m sure it can’t be that bad.
It is that bad.
It takes a toll on everything that you do. From what you eat, to what you wear. To how you live your day to day life.
I’m currently on a high fat low carb diet, another attempt to curb this disease and three different kind of medications, not including the pain killers i need to take in order to get a bit of respite.
You have to change a lot just in order to manage it.
But what isn’t talked about often is the impact it has on you mentally.
Living with Chronic Pain is not an easy task, and though those who suffer with this are incredibly strong, It takes a toll. It impacts every aspect of your life, Socially you don’t want to go out because it’s embarrassing, it’s painful you feel like crap. Intimacy i can’t even fathom at this stage.
When you have a flare up it does take weeks or months for the lumps to completely dissapear, like i mentioned earlier, the worst break out you had times 10 and placed in one of those areas. You know it’s going to take weeks to go down, now imagine that another lump appeared right next to the first one.
That is HS. The cycle repeats.
It’s hard to feel good and happy when you are constantly battling a silent disease. You don’t want to be touched, you don’t want to be held. You want to be left alone, Because it’s painful and it hurts. It’s quite easy to feel depressed. When you have all of this on your shoulders.
It’s a struggle to sleep, I suffer from intense itching at night and when i am in the sun. This has led me to be indoors a lot.
It’s hard to get up and go to work or study.
It’s hard to do everything.
Which is my point of writing this post. You aren’t alone, there are support groups out there.
You are beautiful and the scars it leaves on your skin don’t define you.
If any of you have any questions about HS, please feel free to ask them. Even if you just want someone to talk too.
We are human, and of course we wish our friends who don’t have it could understand the pain we have to go through everyday, don’t expect them to understand. Unless you have it, you have nothing to draw on.
That’s what it’s like to have HS.