Hidradenitis Suppurativa Awareness Week: Painful, Chronic, and Incurable
This chronic illness has traumatizing photos online, search at your own risks
It’s Hidradenitis Suppurativa Awareness Week, so I wanted to write an article about HS and how this painful chronic illness can affect lives—mine too.
HS can be caused by a lot of factors. People with HS are not at fault, didn’t do anything wrong. It has nothing to do with being dirty or overweight, and it is neither an infection nor contagious.
I have determined that my flares are due to stress (like a lot of health problems in my life). It means that when I get stressed, I will get bumps under my skin.
Those bumps get red, itch, grow, pull on my skin for days or weeks, then will rupture and drain fluid. They can be nodules or abscesses. At the worst, they can make tunnels under the skin that are either constantly open or reactivating once in a while.
Mine grow in places where it is very hard to live with, like under the arms, under the breasts, between the skin creases of the stomach, or in the buttocks/groin area. It means that I sometimes just can’t sit and have to lay down. It means that, at times, even laying down, it’s unbearable.
There are three stages to HS. It’s incurable. Sometimes, with age, it can become less painful.
You can’t live pain-free with HS. As soon as you move, it hurts. Sometimes the bumps take weeks to burst, and you hurt like hell until then. Then, the abscesses leave scars that keep itching.
The only solution I’ve been offered is a painful operation, where the doctor will open where the abscess is, and then remove the tunnels. If they miss some part of it, you’ve been operated on for nothing because the tunnel will open up again right next to the zone you’ve been operated on.
And then of course you have to wait until that deep wound closes up (that takes weeks as well). No, thanks. I can’t stay in bed for weeks. I don’t want to be operated on again and again.
So I’m trying to reduce the stress in my life, which is not always possible.
This is one of the reasons why I advocate for self-care and rest. This is why sometimes I just can’t work. I live my life with painful abscesses. They can be more or less painful, but they’re always there. People who don’t live with chronic pains can’t know how draining it is to always suffer. It takes a lot of energy and planning.
I get questions about why I don’t write every day, and why I go rest in the afternoon. This is why.
There is a lot of emotional strain with HS. Doctors are not helping either, they only have ableist and fatphobic advice to give, and it takes a toll on your morale. People don’t understand it and give a lot of unwelcome advice, minimizing the pain we experience.
So, for Hidradenitis Suppurativa Awareness Week, I wanted to share those painful problems with you. More people than you imagine struggle with HS. It’s an “invisible” chronic illness. People are ashamed to bring it up, because other people may think they’re contagious or be grossed by it.
Chances are, someone you know and love has HS, and you don’t even know it.
Treat chronically ill people with respect and kindness.
