By Angelic Navarro
“It’s the dark and crippling side of an autoimmune disease, the side that doesn’t have a t-shirt for survivors or a bumper sticker.”
“Five dollars and forty cents” she said. I pay the cashier and she hands me my change. I started buying these large size bandages from this discount dollar store only a few months back. You know, larger than those used for a paper cut but smaller than an index card. Today I bought five boxes. No candy, no random feel good unnecessary goodies, just bandages. Five boxes, ten in each box, that’s fifty bandages. This should last me about a month. For years I had been buying them wherever I bought my necessities like shampoo, toothpaste, toilet paper. I decided I was going through too many boxes and needed to cut costs. I thought buying ten at a time would draw too much attention, so I went with five.
Looking at me you’d never know I’ve invested so much into bandages, doctor’s visits, and medications. At first glance, I present myself as a gender fluid outgoing Chicana with a love for hats and baseball shirts with bright colored sleeves. At work I play the role of professional IT analyst and carry on with black slacks as a usual part of my daily attire and jeans on casual Fridays. What should be highlighted in these descriptions are the words “present” and “play the role of”. I’m usually an open book. Starting the first PRIDE club in college and notorious for sharing too much information with friends. When it comes to advocating for others, I am strong. This, however, it’s not the same. It’s underneath my clothes and carves deep inside my spirit. It’s the dark and crippling side of an autoimmune disease, the side that doesn’t have a t-shirt for survivors or a bumper sticker.
I was diagnosed with Hidradenitis Suppurativa over twelve years ago. Diagnosis however came far after my first flare up. It was in my teens around puberty when the first flare up happened. Now at age thirty-six it is as much a part of my daily life as getting dressed in the morning. I relate it to that because this is the time of day I despise it the most.
Hidradenitis_suppurativa per Wikipedia is a “rarely diagnosed chronic skin disease characterized by clusters of abscesses or subcutaneous boil-like “infections” (oftentimes free of actual bacteria) that most commonly affects apocrine sweat gland bearing areas, such as the underarms, under the breasts, inner thighs, groin and buttocks.”
It doesn’t sound any better on paper than it is in real life. Although there is more, more than a diagnosis can tell you or even more than an online forum might be able to offer. I have found that everyone’s experience is different. This is mine.
I have a high tolerance for pain. I know this only because after having surgery eleven years ago I was warned by the doctors it would be painful. The surgery removed flaps of skin from my armpits. The wounds were left open to heal with a wound vac machine. It was a requirement that I tolerate the bandage changes in order to be released from the hospital. I was no stranger to pain by then, this surgery came after countless urgent care visits to have abscesses drained. Pain was my normal. I often cried driving home from those impromptu visits. Within hours an abscess that I could be self-treating at home would go from tolerable to infected or painful and my mobility would be compromised.
Inside the procedure room I can count on a couple of things. There will be pain, there will be shame and there will be sadness. Depending on which part of my body becomes occupied by this disease on this particular day depends on how I will undress. Where there will be iodine sterilization. Where there will be an incision, sometimes with anesthetic and sometimes without. There will be blood and fluid filled puss sopped up on gauze and likely on my hospital gown, all with a bad odor. There may or may not be a bag of surgical supplies sent home with me. Surgical scissors, tweezers, gauze, surgical tape, wound packing strips, gloves and saline. This is for deeper wounds. Doctors suggest they heal from the inside out. Some days I can use the bandages that I mentioned buying. It doesn’t mean the pain is any less. It just means it’s more containable. Wounds range from quarter size to three to four inches in length. Sometimes I have one wound. Sometimes I have over five at one time. Since my surgery removed the sweat glands under my arms, long ago, the flare ups have traveled to my groin. Some days I soak in a tub of Epsom salt. Some days I limit gluten. Some days I meditate because stress has been known to increase flare ups.
Unless you deal with chronic illness, pain, chronic anything or live with someone who does. It is easy to fall into a state of invisibility to others. Especially about something as intimate as wounds on one’s groin. My partner on the other hand, she sees it all. She’d be the first to advocate for research or wear a shirt in support. She’s actually saved me in much greater ways. She’s held me while I cried because I couldn’t get out of bed. Kissed me with encouragement on a day I have to return to work after my body’s unwillingness to stay healthy. She has watched me get an incision, while I controlled my breathing to manage through the pain. There when immediately after the doctor shamefully suggested I lose weight, which isn’t helpful. Not everyone with HS is overweight and not everyone overweight deals with HS. She’s also held my hand while I sit in a tub of hot water and my frustration and anger has gotten the best of me.
HS isn’t something you necessarily die from but infections can get unruly fast and unexpectedly. Once my fever elevated and I had tremors from chills. I spent fourteen hours in the emergency room. A few bags of IV fluids plus antibiotics and I was released. First the marker comes out and the doctor circles the inflamed area and says, “If this spreads outside of this area, come back immediately.” The other symptoms that aren’t accurately documented are depression, anxiety, self-consciousness, overall fatigue and hopelessness. I’m already predisposed to depression and anxiety so it can be a pretty bad mixture of a storm if I slack on any of my medications.
On my best days I am calm and content. Making it to functions and appreciating the day. On my worst days it hurts to move and I miss out on things. Productivity does not equate happiness for me, feeling good and content does. There is no cure for this disease, only management. So when the mantras of gratitude turn from, “I am grateful I have health insurance, I am grateful I can buy bandages, I am grateful I am aware of my disease so I can manage it,” when those mantras turn into “I am too tired, my body hurts, this is not fair.” I let the warrior of my historical past rest and I ask for help and I let that help in.