Unimaginable. Impossible. That’s what most people would say if faced with the battle that I face on a daily basis.
I have suffered from Hidradenitis Suppurativa for eighteen years now. It’s funny because I remember as a child being so excited for my period to come. Thinking it meant I’d get boobs, hips and suddenly have curves like Jessica rabbit. I would have never anticipated it meaning the swift onset of this debilitating disease.
At the age of nine, my period started and besides the typical body changes I also experienced these red bumps that started by my groin. When I’d ask someone about them, they would say it was just an ingrown hair.
Then by age sixteen, I had these crazy red bumps along my panty line that wouldn’t go away, and random occurrences in places such as my belly button. I had been hospitalized for cellulitis (that formed around my stomach), which they couldn’t control.
What started as an itchy belly button, turned into a full-on abscess that caused cellulitis on my entire torso. From neck to groin my skin was so red it looked purple.
The CDC ended up coming out to document my battle. They took pictures, and wrote things down. They ended up putting a tube into my belly button to help it drain. Still had no diagnosis, leaving the doctors baffled.
By the age of eighteen, I found myself pregnant and plagued by these mysterious painful red bumps. But now they appeared on both armpits, as well as the groin. They were getting bigger, angrier, and now when they’d drain, they would leave pretty large holes.
This scared me, so I went back in to get another opinion. After numerous doctors and specialists, it seemed the medical community had no answers for me. But I wasn’t convinced that there was no answer, so my friend and I began quite the quest for information.
We searched everywhere, online forums, medical sites, medical magazines, and even questioned doctors and specialists. We ended up compiling a list of the symptoms I was experiencing, and we stuck to those as markers for possible related ailments.
After extensive research, we all settled on Hidradenitis Suppurativa as the one thing that it had to be. Everything matched. So I printed out a bunch of info and made a doctor’s appointment, brought a friend and my printouts, and prepared to get shot down again.
Much to my surprise, this doctor knew what she was talking about. She agreed it was stage 2 H.S. and explained my diagnosis, which, of course, hit me like a brick wall. Eighteen years old and given a life sentence to carry out in a torture chamber, with no hope of respite.
To be honest, I was terrified. My life has been complicated enough without adding a disfiguring skin disease. But, like all things before, I had to face it head on, despite how stinky, ugly, painful and embarrassing it is.
I was started on a regimen of strong meds to try and combat this; the meds changed over time. My H.S. didn’t respond very well to almost anything. I’ve tried antibiotics, hormone therapies, metabolic therapies, immunosuppressant therapies, steroids, radiation, you name it, and chances are I’ve tried it.
At the age of twenty my H.S. had progressed to the point where I needed surgery on my right armpit, thanks to post pregnancy hormone changes. So I underwent and survived that surgery.
Meanwhile, my parents couldn’t care less when faced with my battle with this disease. I mean, how could they care? To them it was an imaginary ailment I made up to compete with my older sister who suffered from MRSA and Sickle Cell Anemia. (And yes, she was very sick, struggled with it for so long, and was so very unhappy, that even as I write this, I can’t imagine why my parents think I’d want to compete for sickest person like it’s some prize to win.) So I kind of detached myself from them. Over the next few years my H.S. progressed, to where we are now.
I’m twenty-seven and the meds and surgeries no longer help. I’ve recently been diagnosed with cutaneous Crohn’s (Crohn’s disease is an inflammatory bowel disease that involves inflammation of the small intestine). This can cause pain, fever, constipation, diarrhea, and weight loss.
Extraintestinal features are common in Crohn’s disease and include arthritis, skin problems, inflammation in the eyes or mouth, gallstones and kidney stones with skin involvement or cutaneous) as well as H.S., which explains so much. But obviously isn’t great news. I don’t know much about Crohn’s, but do know it can be pretty serious. That it’s common among H.S. sufferers, and can increase my odds of cancers as it’s an autoinflammatory disease.
As of now, I’m scheduled for a few more surgeries in a month. The surgeries I had two months ago on both arms, and my groin, ended up getting infected and antibiotics haven’t helped. Surgeries, as well as colonoscopies, and biopsies are coming up soon, and I’m a nervous wreck.
Recently, I broke out into these red bumps that hurt and itched like crazy all over my body. They were very similar to chickenpox, and I assumed they were bug bites.
Well, when they didn’t go away after three weeks, I went in, and turns out it’s because of the sun. Certain medicines can make you have an allergic reaction to the sun while on them, and antibiotics fall into that category. So now, I have to avoid the sun because the last time I was exposed, it scarred my body everywhere.
Another thing that seems to go hand in hand with all this is its massive impact on my emotional/mental health. Depression, overwhelming anxiety, embarrassment, shame, and guilt are just a few feelings I carry.
Honestly up until very recently the only relationship it affected was my parents with me. As you can imagine, I’ve gone through every last boyfriend with H.S. and they’ve been supportive, as well as coworkers, and schoolmates, friends and most family.
But as of this last year, I’ve found myself facing so much resistance it’s debilitating. There are people in my life who don’t believe the disease exists, or don’t believe that it’s that bad. That I’m putting on an act, and often because of that belief, those same people resent me for it.
Oftentimes, people will see me not participating in activities as often as they would like or are used to, and assume that it’s due to laziness, or disinterest. Which has started some pretty serious fights.
People see my family dynamic and assume that because our activities and interactions are different than their own, that somehow reflects on my parenting or worth as a person. They’ll try to belittle the pain I’m in, as if their words could convince my very nerves to repair themselves.
It’s hard to communicate everything I need. I feel guilty for not being able to do the same physical activity as before or as everyone else. I feel guilty for needing so many expensive things while I’m unable to work (gauze, hibiclens, tapes, medicines, etc.), surgeries, hospitalizations, new types of clothing to accommodate HS.
How do you tell people that are closed minded about all the things that go with it? About how your hormones cause – in my case – baseball-sized abscesses in the most delicate places of your body? Or how after a while your body stops healing itself, so you’re left with open tunnels in your skin?
Or about how there’s permanent nerve damage, digestive health issues (in my case it’s Crohn’s) scarring, restricted movement from scarring and fibrosis in underlying tissue, obstructed lymph drainage and conditions associated with that, inflammatory conditions (in my case it’s arthritis), not to mention the psycho-social issues?
So many issues. Like job instability, unemployment, social relationships deteriorating, family relationships deteriorating, and suicidal ideation. Suicidal Ideation in fact is something I secretly carry, and struggle with.
I don’t let many people know, but there are times when everything gets worse, physically, mentally, and emotionally, and I think why not end it?
But I have to remind myself that as hard as it is for me, someone always has it worse. And that no matter how alone I feel, there are HUGE communities full of people who are facing the same struggles.
I’ve been so lucky to find my fellow H.S. warriors, and survivors. I absolutely believe that together we can bring awareness and conversation to the general public, and the medical community to hopefully find better, more effective treatments and someday a cure.