One day, when I was a teenager, I felt a large, painful lump in my armpit and hoped it was just an ingrown hair bothering me. It went away a few days later, so I assumed my self-diagnosis was correct. A month later, another lump appeared, but this time under my other arm. These bumps came and went, but each time hurt terribly and there didn’t seem to be any remedy but to wait for them to either die down on their own or burst open and drain.
I was too afraid to tell anyone about it because it was so embarrassing. It hurt too much to shave my armpits and the bumps made them look unsightly, so I stopped wearing tank tops. The bumps got painful to the point that there were some days I couldn’t even lift my arms. The cysts spread to my breasts and inner thighs as well, which made walking painful and wearing an underwire bra feel incredibly uncomfortable.
As I got closer to graduating high school and going off to college, I finally decided it was time to figure out what was wrong and I googled my symptoms. It turned out that I had hidradenitis suppurativa, a rare disease that affects your lymph nodes and causes an intense form of acne-like cysts that only get worse with age. After finding a dermatologist and finding out there’s no cure, I spent years trying to deal with it through a combination of pills and minor surgeries that didn’t work. Since 2014, I stopped the treatment and decided to deal with it on my own.
Outwardly, someone may look fine and healthy, but under their clothes or hiding beneath their skin, agony is chronic and constant.
Invisible illnesses plague many people in the world. Outwardly, someone may look fine and healthy, but under their clothes or hiding beneath their skin, agony is chronic and constant. There are varying levels of diseases and syndromes that can affect a person, and my hidradenitis suppurativa is definitely not at a point where I feel too debilitated to live a blissful life, but it’s taken a toll on me in an unfortunate way that makes my favorite activity of travel a bit frustrating at times.
I never know when an outbreak of cysts are going to erupt and cause excruciating pain. I haven’t seemed to figure out any sort of consistent trigger for the lumps to come out of hiding to attack me, but I am always feeling irritation from them in some way or another. As someone who likes to travel light and wear a backpack to avoid lugging around a suitcase, I’ve had to find a balance when it comes to straps that cut into my arms. Trying to travel solely with a backpack has cost me some good days when it comes to the pain that follows.
As a curvy traveler, I already get the oh-so-fun chub rub when I do a lot of walking, but on days when there’s a flare-up on my thighs, I feel so terrible when I am unable to go for long without needing to take a break to avoid the friction making the problem worse. And it’s hard to explain to a travel partner why I need to stop without sounding like I have no endurance and that each step hurts internally to the point where I can’t enjoy anything.
Sometimes I wish I could be carefree and wear a bathing suit and go out into the water and take a cliche photo with my arms up, looking all happy and unbothered. But embarrassment haunts me with every potential change that my armpits could become visible to another human being and they could see the mangled, lumpy skin that hides under there that I am so ashamed of. Beach vacations are about letting loose and relaxing, but I avoid them at all costs to lessen the chance of wearing anything that could lead to the exposure of my secret.
Travel is my passion and I refuse to let this stand in my way.
I cannot go a day without taking my clothes off for the night and there not being stains on my shirt from where my lumps have decided to drain on me. A normal person can pack clothes thinking they will be able to use a shirt more than once, but often my suitcase needs a healthy ration of tops to offset this unfortunate problem. And the smell these leaks produce is not hidden by deodorant, which makes me nervous every time I sit next to a stranger on a plane, train, or bus, hoping they wont smell the aroma that I have no control over.
It’s bad enough that if affects my daily life, but when I travel, the stress of the planning and making sure everything goes right makes my disease seem to rear its ugly head and get worse, leaving me with one more problem to deal with as I try to see the world. Chronic pain is not a fun thing to have to worry about when you’re seeking enlightenment and beautiful sights abroad.
But here’s the thing: travel is my passion and I refuse to let this stand in my way. I may have to alter certain behaviors or avoid certain things to attain my goal of being a world traveler, but I am happy to push through the pain to make this happen. I never talk about my invisible illness with anyone because it’s a personal trait that I don’t want to explain to people who might think I’m contagious (I’m not), but I think it’s time to be open about my affliction and let others know they’re not alone. Walking through the world while worrying about balancing my health and my passion is an odd path to take because I am constantly unsure of what aches lie before me, but I am determined to take on the challenge and hopefully inspire others to do the same if they’re able.
