**Photos in this post may make the squeamish squeamisher**
Why this post? I honestly am not sure. I’m not positive what I want to get out of it, but I’m compelled to write about it. I hope that maybe it will help people understand a bit what HS fighters deal with, I hope that maybe I’ll come to more of an acceptance of it myself, I hope that it doesn’t fall on deaf ears…but I hope you don’t treat me as a leper afterwords either. If you don’t want to see what I live with daily, you may not want to read any more. Disease is scary for a lot of people, I get it, it’s ok.
Let’s start with what it is NOT. It is NOT contagious. It is NOT known what causes it nor what could cure it. It is NOT fun, made up, or just a way to get out of things. It IS real, and it sucks. Hidradenitis suppurativa is a disorder of the terminal follicular epithelium in the apocrine gland–bearing skin. (thanks medscape). Doesn’t really say much..so let me try my best to help you understand…
HS is often called an invisible illness, because you can’t see how sick we are or feel, but I feel that is a misnomer because there are VERY visible scars and effects of this disease. On a good day, I have less but always present pain, no fever, and can function fairly normal as long as I don’t overdo it (right spoonies?). I get 10 of these days per month if I’m lucky, many times it is closer to 5. On a not so good day, I’m flairing in extreme pain, low fever (or high if something is infected), and it takes monumental strength to perform normal daily tasks. Oh, I also look like crap. I have worse pictures from worse days, but I didn’t want to completely scare you away. I’m really good at hiding the not so good days…if you’re someone I confide in, you’ve seen this a LOT.
HS is a disease that causes horrific sores that resemble boils in they way they look, but that is kind of where the resemblance stops. You feel them before you see them. As they form and tunnel into your body they affect nerves and your skin burns in such a way that it feels like you are being burned alive and because it is nerve involved pain it hurts everywhere, not just where a flair is happening. They fill with a fluid that is actually sterile, which is hard to believe, but if cultured they almost always come back negative except for bacteria that already lives on your skin normally. They rupture, they bleed, they seep, they hurt like h-e-double hockey sticks. If we can’t get them to heal they get infected, in a very very scary way. Untreated (and even treated) it can lead to life threatening sepsis. These pictures are of my arms. Sigh. I never ever thought I would share these with anyone, much less the world on an open blog (albeit a small following so I feel somewhat better about it). At least the photos are small…
Not pretty, is it? This is pretty much my every day. They calm down a little sometimes, but more or less I have to figure out ways to make THIS as comfortable as possible. Range of motion diminishes not just from pain of active areas but also in the areas where scar tissue forms. Doctors don’t have a clue what to do to cure it. They say we won’t die (at least not directly from it), but in the last two months four people known to our support group have passed from the toll it took on their bodies. Treatments are experimented with, foods are eliminated, tests are ran, homeopathic remedies are tried, the list goes on and on but no one knows why sometimes people go into remission and then out of the blue it is back. Some people never go into remission. Is it hormonal? Maybe. Stress? for some. Food allergies/sensitivities? Eh..maybe? The point is is that every single person with it will have different triggers, and every single person is going to respond differently to “treatments” that may or may not work. Strong meds (think scary infusion cancer clinic type meds) are showing some promise for some people and putting a few into remission.
Where will it stop? I don’t know. Mainly I’m affected in the axillary (under my arms) and upper torso areas. But…anywhere apocrine glands exist, HS can exist. Yeah..think about that for a sec.. Surgery? Yes, surgery is an option. A maintenance option. It does not get rid of it, it is extremely painful and many times involves skin grafts, and it is also extremely expensive. Yet, most of us will at some point undergo some form, whether wide excision or smaller areas because the thought of going one more day without some form of relief, even temporary relief, is unbearable.
I have bad days, really, really bad dark days where I scream out to God wondering what purpose this possibly has in my life. I don’t have an answer. I take one day at a time, one treatment at a time, one (thousand) bandage at a time, one massive doctor bill at a time. I absolutely have pity party days, but I try my best to rejoice in the good things of each day, the blessings all around me, even when it isn’t a good day for me.
If you’d like to support HS awareness and research, I always have a fundraiser open here, and click on the Open Parties tab.