I was about 12 or 13 when I got my first hidradenitis flare.
Of course, I had no idea that it was HS or that it would be something that I would continue to deal with for the rest of my life. I remember that the first flare was on my upper thigh and started almost like a pimple...but then it continued to grow, getting more and more painful as it grew larger. Eventually, it caused me enough alarm that I told my mother about it. She assured me that it wasn't cancer and I wasn't dying [I've always been prone to anxiety 😅] and that the bump would go away on its own in a day or two.
Well, she was right, it did eventually go away. But it 'popped' and oozed purulent blood before it did! I remember being worried about the bump, especially because of how painful it was, and worrying that there was something wrong with me. However, since the bump eventually went away on its own, I didn't bring it up again to my parents. A few months later, I would start to develop similar bumps, but this time they were under my arms, in my armpits.
After a few of these bumps came and went, I remember bringing them up to my parents again, saying that I had the rather large, painful 'knots' in my armpit. At this point, the flares wouldn't always open and drain...they'd get large and angry and then subside about a week later. Giving it their best guess, my parents said that they thought it might be swollen lymph nodes due to some sinus/allergy/upper respiratory crud. It was a good guess! At that point in my life, I was struggling with allergies much more than I am now. But! The knots, lumps, and bumps actually had nothing to do with allergies at all, not even close!
Ok, so I'm guess that those of you that aren't blessed with HS are probably curious to know what exactly the flares are and what they look like....I'm nowhere near brave enough [yet] to post pictures of my own skin, so these are images that I found online.
***GRAPHIC IMAGE WARNING***
[Seriously! You may not want to keep reading this post if you're squeamish!]
This is what a flare looks like before the 'knots' start draining. At this point, they're quite painful and any sort of touching or friction will probably make me want to jump to the ceiling! But, the thing about these 'knots' is, they almost unfailingly get much bigger than these...
This second picture is not a nipple, I promise! [It totally looks like one, though, doesn't it!]
This is a HS flare-up that's on the verge of opening and draining. At this point, you can see that it's huge, it's angry, and it's bound to be making this poor person miserable. Now, place this angry nuisance in one of your 'high-friction' zones of your body [armpit, inner thigh, underboob for the ladies] and you've got a day in the life of an HS sufferer. At this point, we're generally begging and pleading for this thing to drain to get some relief...
After the angry 'knots' open and drain, we're left with essentially open, hole-like wounds. This particular picture looks like the flare has been healing for a few days after it has opened and drained. At this point, HS management is about trying your best to manage these open wounds and keep them from getting infected...or swelling back up! Unfortunately, these wounds don't always heal...or if they do, it can take months. So, I'm sure you can imagine the toll that all these wounds have on a person's skin...
This picture looks to be of a fairly advanced case of HS, and yet all of the wounds appear to be closed. Sorry for the gruesome image, but this is the reality of HS! HS leaves us with horrible, Deadpool-looking scarred up skin. It's disfiguring. It's humiliating. And it's not our fault. [And it's NOT contagious, by the way!]
Hopefully, the gross-out worthy pictures in this post help to better paint a picture of what it might be like to have HS...I know that the vast majority of people have no idea that HS even exists!
In my next post, I'll explain the different stages of HS and tell my HS diagnosis story...check back soon!
P.S.: In the meantime, I'm posting the links for some websites with information about hidradenitis. Feel free to check them out, if you like!
Mayo Clinic - Hidradenitis Suppurativa
American Academy of Dermatology - Hidradenitis Suppurativa
HS-Foundation - What is HS?
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