Traveling as a Spoonie
Traveling is often romanticized as a thrilling adventure—exploring new places, catching up with old friends, and immersing oneself in vibrant cultures. But for those of us living with chronic illnesses or disabilities—often affectionately called "Spoonies"—traveling can be a complex, exhausting balancing act. I recently experienced this firsthand during a trip to London, and I want to share some reflections on the invisible symptoms and challenges that outsiders rarely see or understand.
The Invisible Weight of Non-Apparent Symptoms
When you look at me, I might seem fine—walking, talking, smiling. But beneath the surface, my body is juggling a host of invisible challenges:
Temperature Dysregulation: My body struggles to maintain a stable temperature. The cold London weather mixed with the heat blasted inside the Tube can send my system into overdrive, making me feel chilled one moment and overheated the next.
Adrenal Fatigue and Exhaustion: What feels like a “normal” day for many can leave me utterly drained. The adrenal fatigue that accompanies chronic illness means that running errands or sightseeing—even something as simple as navigating a tube station—can zap my energy reserves rapidly.
Joint Concerns: Added movement and standing for long periods exacerbate joint pain and stiffness. The constant walking around an unfamiliar city turns into a negotiation with my body: How many steps can I take before the pain becomes unbearable?
Dietary Challenges: When I’m away from home, my carefully curated whole foods routine gets disrupted. Finding nourishing, allergy-safe, or anti-inflammatory meals on the go is a challenge. Sometimes, I have to settle for whatever is available, knowing it might affect my symptoms later.
Sensory Sensitivities: Fragrances in public places, taxis, and even duty-free shops can trigger headaches, nausea, or respiratory discomfort. These are invisible assaults that wear down my resilience.
London: The Joy and the Struggle
One of the most joyful parts of my trip was reconnecting with old friends—because truly, old friends are the best friends. They see you, know your story, and share a history that feels like home. Those moments of deep connection are energy-giving in a way that’s hard to describe.
But moving through London’s crowded public transport system was another story. The city pulses with constant motion and a crush of people, none of which is tailored for someone like me with limited spoons (energy). I found that I only had the spoons to manage the journey one way on the Tube. The return trip demanded adjustments—subbing in cabs, reducing walking distances, and prioritizing rest whenever possible. It also sometimes meant that I was a sardine, and one of very few wearing a mask for protection.
Resting in spaces that aren’t your own, that aren’t optimized for your wellbeing, adds another layer of difficulty. The bed might be unfamiliar, the noise unpredictable, and the air scented with perfumes or cleaning products that unsettle my nervous system.
The Constant Trade-Offs
Traveling as a Spoonie means constantly making trade-offs. Every choice—walking or cabbing, eating this or that, staying longer or heading home early—is a calculation of how it will impact my health. The trade-offs are rarely perfect, and I often return home needing major recovery time to recalibrate.
What’s challenging is that many of these limitations are invisible to outsiders. My reduced cardio capacity, my need to avoid crowds or fragrance-saturated spaces, my fluctuating energy levels—these are not always understood or respected. There’s no visible assistive device, no obvious cue to signal that I’m “not just being tired.”
Changing Routine
One of the hardest parts of traveling as a Spoonie is the disruption of carefully cultivated routines that help us stay regulated and well. On this trip, I was able to maintain some movement and stick somewhat to my dietary preferences, which felt like a small victory. But beyond that, many of my usual self-care practices—those micro-routines that support my nervous system and energy levels—had to be interrupted or put on hold. This interruption isn’t just inconvenient; it can feel destabilizing. Those small daily rituals are often the anchors that keep overwhelm at bay, so losing them means I had to be extra gentle with myself and adjust my expectations. It’s a reminder that wellness isn’t a linear path but a dance of adaptation and compassion, especially when navigating unfamiliar terrain.
What I Wish More People Knew
Invisible doesn’t mean imaginary. Just because you can’t see my symptoms doesn’t mean they’re not real or impactful.
Energy is finite. My “spoons” are limited, and once they’re gone, they don’t refill quickly.
Flexibility is essential. Plans might need to change on the fly, and that’s okay.
Compassion goes a long way. A little understanding and patience can make all the difference.
All of these adjustments require extra budget: for energy and for expenses.
The Good News
Despite the challenges, there were many positives that made traveling as a Spoonie in London more manageable than I remembered from my last visit over seven years ago. The availability of ample cabs and multiple public transport options provided flexibility to choose what worked best for my energy levels on any given day. Accessibility on the Tube and buses has noticeably improved — I appreciated the clear announcements about elevators and ramps at stations, making navigation less stressful. The city’s infrastructure felt more thoughtful with curb cuts and more even pavements throughout, which helped reduce physical strain. Additionally, the wider availability of food options, including whole food and dietary-specific choices, made it easier to maintain some semblance of my usual eating routine. These improvements don’t erase the difficulties, but they do offer meaningful support that can make all the difference for Spoonies trying to engage with a bustling urban environment. But my advice? Consider staying outside the city if you can, and have everyone come to you! There are tons of options along the Thameslink and other rail providers, all within 20-30 minutes of London. That’s what I plan to do next time, in fact! For me, removing myself from the hustle-bustle is meaningful for recovery — and that, in and of itself, is priceless.
Finding Balance and Compassion on the Road
Traveling as a Spoonie requires deep self-awareness, advocacy, and kindness toward oneself. It’s about creating space to rest, adjusting expectations, and holding onto those moments that truly feed your soul—like catching up with old friends.
If you’re a fellow Spoonie or caring for one, I hope this glimpse into the complexities of travel helps foster empathy and support. And for anyone without these experiences, I invite you to hold curiosity and compassion for what’s unfolding beneath the surface of a seemingly simple trip.
Thank you for reading and journeying with me. If you have your own stories or tips for traveling with chronic illness, I’d love to hear them in the comments.
With warmth and care,
Lauren xoxo
This post is part of my ongoing exploration of wellness, nervous system regulation, and living fully with chronic conditions. For more reflections and resources, subscribe to my newsletter and join the Recharge Room community.