This Is What It's Like to Travel With an Invisible Illness
Our take
This piece, "This Is What It's Like to Travel With an Invisible Illness," resonates deeply with the growing conversation around chronic conditions and the often-unseen burdens they impose. The author’s recounting of recurring, unexplained lumps as a teenager immediately establishes a sense of vulnerability and the frustrating uncertainty that often accompanies invisible illnesses. It speaks to a shared experience for many – the dismissal, the self-diagnosis, the gradual realization that something is fundamentally *not right*. The article’s focus on travel adds another layer of complexity, highlighting how managing a chronic condition becomes even more challenging when navigating unfamiliar environments, healthcare systems, and potential accessibility barriers. It’s a stark reminder that the world isn’t always designed with the needs of those living with chronic ailments in mind, and the simple act of enjoying a vacation can become a logistical and emotional tightrope walk. The broader context here is a shift in how we understand and discuss chronic illness; moving away from silence and stigma towards openness and advocacy. We've previously explored this nuance with articles like I Have Chronic Allergies — and the Cure Is Almost as Bad as the Symptoms and How I Learned to Love My Bumps and Scars From Hidradenitis Suppurativa, both demonstrating the diverse spectrum of chronic conditions and the individual journeys of acceptance and self-care.
The significance of this article extends beyond the immediate personal narrative. It touches upon a larger societal failure to adequately support individuals navigating chronic illnesses, especially when those conditions aren’t readily visible. The emotional labor of constantly explaining, justifying, or downplaying symptoms – particularly while traveling – is immense. It’s a burden compounded by the pervasive ableism that still exists, where perceived normalcy is often equated with health and capability. The author’s experience underscores the need for increased awareness, empathy, and accessibility within the travel industry. This isn't simply about providing ramps or accessible restrooms; it’s about a fundamental shift in mindset – recognizing that travel should be inclusive and supportive of *all* individuals, regardless of their health status. Furthermore, the article’s implicit call for better medical support and understanding is crucial. Delayed diagnoses and inadequate treatment plans are common experiences for those with invisible illnesses, adding another layer of difficulty to managing their conditions. The interconnectedness of these challenges – the social stigma, the lack of accessible infrastructure, and the healthcare gaps – highlights the systemic nature of the problem.
The personal accounts of couples navigating chronic skin conditions, as shared in Real Couples Share How Chronic Skin Conditions Impact Their Relationships, further illuminate the ripple effects of chronic illness, extending beyond individual experiences to impact interpersonal relationships. The emotional toll on partners, the logistical adjustments required, and the constant negotiation of needs create unique challenges that demand communication, understanding, and resilience. The article on travel adds a particularly poignant dimension to this conversation, emphasizing the heightened stress and vulnerability that can arise when navigating unfamiliar environments while managing a chronic condition. It’s not just about managing symptoms; it’s about safeguarding mental and emotional well-being in situations where control and predictability are often limited. It reinforces the importance of self-advocacy, meticulous planning, and the courage to prioritize one’s own needs.
Ultimately, this piece serves as a powerful reminder that the lived experiences of those with invisible illnesses are often vastly different from the narratives we typically hear. It encourages us to look beyond the surface, to cultivate empathy, and to advocate for a more inclusive and supportive world. The rise of online communities and platforms dedicated to chronic illness awareness is a positive development, fostering connection and providing a space for sharing experiences. But the real work lies in translating this awareness into tangible change – in healthcare, travel infrastructure, and societal attitudes. A question worth watching is whether this growing visibility will translate into meaningful policy changes and systemic reforms that truly address the needs of those living with chronic illness, allowing them to navigate their lives, including travel, with greater ease and dignity.
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.
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 cliché photo with my arms up.
Sometimes I wish I could be carefree and wear a bathing suit and go out into the water and take a cliché 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.
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.
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Samantha O'Brochta is a travel writer and content creator based in New York City.Read on the original site
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