Down the Rabbit Hole

Those Angry Days of Living with HS

There is a fury inside of me today that I am trying to quell with seemingly copious amounts of Motrin and coffee. Today it feels like my pain is more than just topical in nature. There is hot anger running through me and this anger feels like a new, unwelcomed component of dealing with my HS. I’m beyond irritable. I am unapologetically short-tempered and intolerant.

Since my diagnosis in my early thirties, I have lived by the rules of prevention and pain management. I have gathered what remedies and suggestions I could from the forums and tried not to be frustrated by the lack of real medical support. My dermatologist called it an “orphan disease”, abandoned largely by the medical profession. Until you are dealing with an agonizing flare up, the true nature of that term may allude you. What it really means is that there is nothing out there to treat you, no cream or ointment, not oral medication to drive the painful boils back down once they erupt. There is nothing you can take medically to control the HS, to keep it locked in remission. There is no cure. You just have to deal…deal with the pain and with the knowledge that it can take you down at any time, triggered by stress, by weight gain or just by the whims of a stalking disease that resides in your genes.

Most days I avoid this tide of anger and frustration by counting my blessings. I believe that I am one of the lucky ones. My HS outbreaks so far have been limited to my upper body and with the exception of the one in my neck, and my resulting scars are largely invisible to others. This is not the case with many people. HS can be severely disfiguring. The boils that erupt, those cysts that become infected and eventually rupture cause bad scarring. I have seen images of young men and women with puckered tracks of scarlet scar tissue running down both sides of their groin. It is this most intimate invasion of the disease that leads to isolation and depression for so many.
Most days, I remember those images and the stories of the people in the forums, and I feel ashamed of the anger. Today though, I’m feeling furious with my body, with its inexplicable ability to manufacture these horrible, ugly nodules that burn and throb and swell to an impossible size. Today I want to scream. Instead, I stock up on the large size band aids and take the antibiotics that will only speed me closer to the inevitable rupture of my skin and the formation of another scar. The antibiotics don’t make me feel better, in fact, the doxycycline tears up my stomach but there is still that small chance that it will stop the inflammation before it progresses to that awful end stage. There is a chance, according to my epically hopeful primary care doctor, that it may attack the inflammation and help the cysts drain and alleviate before rupture – saving me from more scarring and the general unpleasantness that comes with those ruptures. If she can hope, I suppose I can try to be hopeful as well. Hopeful and less angry...

With all of the truths I have come to understand about HS, I am most thankful for the diagnosis. Being able to give a name to the affliction I suffered from for so long in the dark, was honestly the best thing. With diagnosis came the opportunity to explore the research, the remedies and treatments that were available to me. Being diagnosed suddenly gave me the important reasons for this very unreasonable disease. If you think you or someone you know might be suffering from HS, this is the best, most informative and straight forward site I have come across:
https://www.nobsabouths.com/what-is-hidradenitis-suppurativa

If you suspect you may be suffering from HS, see a doctor, start with getting diagnosed. Find what works for you, because it’s different for everyone. Give yourself those angry, furious days…but always go back to hope.