How I Travel With a Chronic Illness (CIRS): Honest Stories & Practical Travel Tips

Travelling the world with a chronic illness isn’t something you often see talked about online, especially when the illness doesn’t “look” obvious. From the outside, my travels might seem carefree and high-energy, but behind every trip is careful planning, flexibility, and a deep understanding of my body.

In this episode, I’m sharing something I don’t often talk about publicly: my experience living with Chronic Inflammatory Response Syndrome (CIRS), often referred to as mould illness, and how it impacts the way I travel.

This is a deeply personal conversation about invisible illness, flare-ups on the road, missed moments, and why I continue to travel anyway... just differently. If you’ve ever wondered whether travel is still possible with a chronic illness, this episode is for you.

What You’ll Learn in This Episode

• What it’s really like travelling with an invisible chronic illness
• How CIRS affects my energy, cognition, digestion, and resilience
• Why I plan trips months in advance (and how I do it gently)
• How I use Google Maps, social media, and AI to reduce planning overwhelm
• My non-negotiables when choosing accommodation
• What travelling during a flare-up actually looks like
• What I pack in my chronic illness travel kit

Helpful Resources & Links

Related blog post: How I Travel with a Chronic Illness: My CIRS Travel Story 

Related blog post: The Future of Travel AI is Here: How AI is Revolutionising The Way We Plan, Book & Experience the World 

Connect & Explore

Find destination guides, travel planning resources and more at touristtotraveller.com, and follow along on Instagram @_touristtotraveller for behind-the-scenes planning and future travel inspiration. 

Transcript

Speaker 0:00

Welcome to the Tourist to Traveller Podcast, the show that helps you go beyond the guidebook and turn your bucket list dreams into real adventures. I'm Tahnee, a travel blogger, podcaster, and everyday explorer who's been ticking off epic destinations for over 20 years while balancing a 9 to 5. Each week I'll bring you inspiring stories, destination deep dives, and practical tips to help you plan smarter, travel deeper, and capture those unforgettable moments along the way. So, grab your passport, pack your curiosity, and let's get started. Today's episode is a really personal one and honestly, one I've sat with for a long time before sharing. If you've ever looked at my travels and thought, she must have so much energy, or I could never do that. I want you to know there's a side of my travel story you don't usually see online. I live with a chronic illness called Chronic Inflammatory Response Syndrome, or CIRS. It's invisible. I don't often look sick, but every single trip I take is planned around my health, my energy, and my nervous system. In this episode, I'm sharing how I travel with my illness, not in spite of it. The planning strategies, the mistakes, the non-negotiables, and the mindset shifts that have allowed me to keep exploring the world without sacrificing my well-being. If you've ever wondered whether travel is still possible with a chronic illness, this one's for you. Before we get started, I want to be clear that this is not medical advice. Today I'm simply sharing my personal experience. Now, let's take a step back to help you understand what I live with on a daily basis. So I have Chronic Inflammatory Response Syndrome, which is also known as mold illness. This affects how my body processes toxins, especially mold and environmental toxins. Unlike most people, my body doesn't eliminate toxins in the same way. It has a really difficult time with it. So they build up in my system, and essentially the toxins poison me over time. My inability to eliminate toxins is partially caused by a genetic mutation that one in four people have, but not one in four people have CIRS or mold illness. Often it takes a heavy exposure andor a trigger event to kick off this illness. And that is exactly what happened for me. I'd been experiencing many different symptoms for a couple of years, none of which seemed related whatsoever. Things like rapid weight loss and rapid weight gain. I was having brain fog, my hair was falling out, and endless infections and gut issues. Of course, I'd seen many doctors, but no one had been able to connect the dots until one night I'd been out, we went to a brewery, I came back and I hadn't had many drinks. And then all of a sudden, in the early hours of the morning, I got up feeling really, really unwell. I knew immediately I was going to throw up. So I got up and went to go to the bathroom and realized that I couldn't use my legs. I couldn't make my way to the door. When I got to the door, I couldn't work out how to open the handle. By the way, I have lived in this bedroom for over 10 years. It is my room. And I couldn't work out how to get out of it. I couldn't turn the light on. I couldn't find the handle. And I'm crouched by the door, desperately needing to go to the bathroom. I knew that I was going to throw up and ended up throwing up in my hand, still trying to get out of my bedroom door. I then threw up consistently for a couple of hours. I could barely walk. I couldn't think straight. I didn't really know where I was. And my first instinct was to think that my drink had been spiked. And a few days after that, I realized that I had COVID for the first time. I was already sick from this experience. Layering COVID on top of this made me so incredibly unwell that I hadn't experienced anything like this before. Now, after I was no longer positive for COVID, I just didn't recover. And I went down and I started to have to go through this process of going to doctor after doctor after doctor to try and find out what was going on with me. It felt like every day I was getting new symptoms. I was experiencing numbness and tingling, extreme brain fog to the point where at times I couldn't remember the passcode to my own phone. I couldn't remember how to get to places that I go to every single week. It was horrific. I had migraines and headaches, and I was having a lot of vertigo. The symptoms were just piling up. On top of this, I was having gut issues, my hair was falling out, skin problems. It goes on and on and on, and no one could work out what was wrong with me. I had suspected either long COVID or mold for a while now because we had found mold in our property and we were cleaning mold at the time that I got sick. The exact day that I got sick, and doctors kept brushing it off. So when I finally found someone who was willing to listen to me and to test me for a whole range of different things, uh, we could find out that my body was being poisoned, that I had mitochondrial dysfunction, that I had a lot of other things that I was no longer, you know, I knew was happening, but I finally had the proof that it was. And then finally, after testing me for toxins and mold and testing my environment, I finally had the answers that I've been looking for, which was chronic inflammatory response syndrome. And as soon as I read the symptoms and the description, I knew that is exactly what I had. Now I don't tell my story to scare you, but there's so many people who live with chronic illness and invisible illness every day, and a lot who don't have answers. And I've been there. It's a really tough place to be in. And you probably look at my life and my travels and think, well, you can't really be that sick. And it's it's kind of hard to describe because I feel incredibly sick every day. But if I didn't just get on with it, I wouldn't be able to live my life. And I don't really feel like I have another choice. And I don't want to not be able to live my life. So instead of not living my life, I choose to do it anyways, and I choose to push through and just deal with it. And that includes working a career that I love, that includes continuing the hobbies that I love, and it also includes traveling the world because that is something that absolutely lights me up. And the thought of having to give up travel due to my illness is just something that I can't comprehend. And I know that not everyone is fortunate enough to be in my position. And some people are not in a position where they can push through and that they can continue to work and have hobbies and travel and like my heart just goes out to you if you are in this situation. So four years on, the best way that I can describe to you with how I feel with my illness. I want you to imagine a day where you've woken up with a bad hangover. Now, I mean a really bad hangover. One of the worst hangovers you've had in your life. Come on, I'm sure most of us have been there. Now imagine that hangover doesn't go away all day. And I'm talking the room is spinning, your head is pounding, you feel like you can barely get yourself out of bed, um, you're nauseous, you don't feel like your food will stay down, you want to throw up constantly, you have no energy, your brain is super foggy, that feeling of a really bad, really intense hangover. Now imagine that you wake up with that feeling every single day of your life, no matter what you do, no matter how long you go without alcohol, or no matter how long you stay on your medication, or you eat healthy, or no matter what you do, that is how you feel when you wake up every single day. So that is my current reality. And I feel really nervous about sharing my story because I don't know how people will react to it. So for me, choosing to travel is almost like a big F you to my chronic illness, but it's a commitment to myself that I deserve this, I deserve joy, I deserve happiness. I've been through enough that I refuse to let this bring me down. But it absolutely changes the way that I travel and it changes the way that I live my life. There are a lot of considerations that I need to take into account now when I travel. And sometimes I'm a lot sicker, and other times I can get through a lot on my trip. So, what I want to do today is share with you how I travel with my chronic illness and some of the things that I do to manage my illness whilst I'm on the road. So, this is how I plan my travels with my chronic illness. First of all, I start planning months in advance. The more planning time that I have, the better, because it means that I can plan in my own time. Now, not always am I going to have good brain days or days that I can really clearly focus and spend a lot of time planning. So rather than forcing it last minute, I give myself plenty of time. So when I'm having a really great day or a productive day, or sometimes I do this when I'm actually having a really crappy day and I'm just laying on the couch and I'm bored because my body won't really allow me to do much else. These are great times for me to start my travel planning. I do it slowly and without stress. My process here is that I start researching really slowly. I spend time reading blogs, watching videos and reels, uh, and I start to put all of the locations that I find that I want to go to on my trip into a Google Maps list. Typically, my save list will be things like the top sites that I want to see, hidden gems, it will be restaurants, cafes, bars, sometimes some really great photography spots, like a spot where I know that I can get an epic sunrise or sunset photo, bucket list locations. All of this is saved in my Google Maps in a save list. And I'll just typically name that after the destination, such as Morocco. This way I have everything in one place when I need it. And when I'm on the ground in my destination and I'm not having a great brain day, I don't need to overthink it. I can just pull out my Google Maps and I can see all of the places that I had pinned and any notes that I left on any of them, and I can have a really awesome day without having to make too many decisions. And I can just see what I want to do and what fits in with how I'm feeling on that day. Next up is I let social media do the work for me. I start researching on social media really early by just looking up the destination. So, for example, if I'm traveling to Morocco, I might start searching phrases such as Morocco travel or travel to Morocco. And just off one or two searches, the algorithm will start doing the work and will start giving me more and more content like that. Essentially, these platforms want to keep you on their platform. So the more that you engage with certain content, the more the platform will feed you more of that content that you're engaging with. So one simple social media search will get the ball rolling and let the social media platform do the work for me and just serve me up the content that I'm actually looking for. I then save everything in folders. And if I'm traveling with someone, I will make sure that is a shared folder so we can both contribute to what we're saving. It really helps me with my travel planning, but also when I'm on the ground and I'm not feeling great and I don't want to put too much work into planning out my day. Next is I use AI to make planning easier. Now, this is a bit controversial and a bit hit and miss. I personally love the planning side of travel, but I know that's not for everyone. But sometimes I do cheat out of necessity by using AI to help with the process. Now, I just want to put a little caveat out there that AI often gets it wrong and you should not rely on AI to make your travel decisions. Anything that AI is giving you should be thoroughly checked before going on your trip because sometimes the information is not correct, the opening times are not correct. Sometimes it will recommend that you go to destinations that closed down years ago. So it's a really great tool to help you with your planning, but it shouldn't be used as gospel on your trip. However, when I'm having a really bad day and I just cannot comprehend making these decisions, sometimes I will use AI to help me out. And I've created a reusable Chat GPT prompt that I use that has all of my preferences to make it really easy. So, for example, for me, I'm looking for some of my personal preferences are I'm vegan, I'm looking for low tox, adventure meets authentic experiences, uh, I'll add in my budget, my time frame, my travel style. Uh, I save that prompt in the notes section of my mobile so I can just copy and paste it into Chat GPT and personalize it for the destination. It just makes it so quick and so easy to have the information that I need. Now, once AI gives you your itinerary or whatever you're trying to plan, if it hasn't really hit the mark, you can give it feedback and allow it adjust to try again to give you the content that you're looking for. As I mentioned, always, always, always fact check and make sure it is correct. Sense check it as well, anything that comes out of AI. If you want to know my exact prompts that I use in AI, you can find those in my guide, How AI is transforming travel planning. I'll link that in the show notes. Next up is accommodation, and this one is really, really important for me and my chronic illness because I have some key non-negotiables here. So these are some of the things that I'm looking for when it comes to accommodation when I'm planning my travels. The first thing that I'm looking for, of course, is mold-free environments. That is my that is the accommodation itself that includes communal areas, that includes um where it's located. For example, accommodation right beside a swamp is likely to be full of moisture and therefore a highly moldy environment. It also includes restaurants, anywhere I'm going really on my trip that might be a risk of having mold. To determine mold, I will always have a look at the images for that accommodation that the accommodation provider has prov has posted, but I'll also look at anything that has been shared from guests because I know that they haven't been tweaked or um had a filter put over them, and I can see the timestamp so I know how recent those photos are. I look really closely at things that a lot of people might not look at, such as the ceilings. I'm looking at uh I'm looking at lamps, I'm looking at curtains and blinds, I'm looking for water damage. I'm also reading all of the reviews and any words that say mold, must, damp, mildew, any of those things for me equals red flags and I will not go near them. And even if I just see two or three reviews that might state these words, that's enough for me to avoid the situation. Even if they only have one or two moldy rooms, if the if it's if it's appearing enough in reviews, I need to steer clear. I also understand that mold is everywhere. Trust me, I live this. This is my life. It is in every building, every home, every workplace, but it is the degree of mold, is the severity of mold and the type that is going to determine my experience there. Next up is I'm looking for natural light in my accommodation because I know that natural light typically leads to less mold. I'm really trying to avoid damp, dark properties, and I'll often avoid older properties where possible as well. If your property is old enough, it's bound to have at some stage had mold or water damage, whether that's come from leaky roofs, uh, rising damp or problems with their plumbing and with their pipes. Next up is a kitchen. Now, whether I use it a lot or not during my trip, I want to give myself the ability to cook really clean meals whilst I'm traveling. So this isn't always possible, but if it is, I'll opt for somewhere that has a kitchen. So that way I can cook my own meals that are clean, healthy, jam-packed full of nutrients rather than eating out and eating things that are going to put more inflammation into my body. And when I'm really bad, I will meal prep and I'll refrigerate so that I don't have to cook as often because that can also be challenging when you're traveling. Not only it is it hard when you've got jam-packed days, but also when you're unwell, you don't really feel like cooking. Now I'm about to get really nerdy here, and that is sometimes when I'm really unwell, I will actually travel with plastic containers so that I can meal prep properly. And I know, I know, glass is better than plastic, but it's just not really practical when you're traveling. Plastic is so much more durable for my travels. I'll often avoid certain aesthetics when I'm in a flare-up. For example, if there are a lot of bold patterns on the walls with lots of stripes or zigzags or, you know, crazy patterns, it can really overwhelm my system when I am in a flare-up. And although I love to stay local in accommodation that feels that feels like it gives me some connection to the destination that I'm staying in. Sometimes I will go for five-star accommodation, and it's not for the luxury, but it is for the consistency. There are a lot of five star chains that I know they're going to be clean and they have really consistent cleaning standards, health standards. Also, they can be helpful if you need a doctor, if you need medication. They are highly connected typically in a five star chain accommodation. So I don't do this all the time. It's very rare, but if I'm quite unwell and I know that I need these extra um safeguards in place, I will choose that accommodation. So let's go through now how I travel during a flare-up because it happens and sometimes it happens a lot whilst traveling. So when I wake up and I know it's going to be a rough day, these are some of the things that I do to cope whilst traveling. First of all, if I'm traveling with people, I will delegate the mental load. Before I'm in this situation, before my trip, I will share my offline Google Maps that have all of my pins. I will share my saved folders in social that have all of that information. I will also share the key information for the trip, such as our accommodation details, our flight details, our travel insurance, all of those really important documents and things that we need to know. I will share them so that if I'm not really in a state to make those key decisions or to find that information, my travel companions can. Secondly, I'll book a day tour. If I can't even comprehend planning my day tomorrow, rather than sitting there and be paralyzed by indecision, I will often book a day tour. I'll book something that I already know that I want to do, that I was planning on doing anyways, and it just takes all of the work out of it. So all I need to do is show up. And I just let the local guide take care of everything else. And if a day tour isn't your kind of thing, you can also arrange a private driver that has an itinerary already planned. So it takes all of the decisions away from you, which is great when you're in a flare up. And thirdly, and this is probably the most important one, that is that I cut myself some slack and I give myself permission to slow down. I spent years beating myself up, but I couldn't think the way that I used to think, and I couldn't do the things that I used to be able to do in the way that I used to do them. But I now I just need to cut myself some slack because I know that I have a chronic illness and I know that I have flare-ups, and that is just my reality. So if I need to completely change my day or to take a rest day or to miss out on an activity, I have gotten to a point now where I no longer feel guilt. I would feel guilt if it impacted the travels of or or the experience of those around me, but you know, it's it's out of my control. So I've just given myself, I've just given myself permission to not think that way anymore. It's not my fault. There's nothing I can do about it. And at the end of the day, I've got to do what's right for me on that day. Something else that has helped me over the years is putting together a chronic illness travel kit. So here is what I never travel without. First of all, essential medication and supplements. Depending on what phase that I'm in with my illness, I might be on a ridiculous amount of supplements. And I'm talking so much so that I have previously occasionally had to take a separate bag purely for my supplements, which seems ridiculous, but you gotta do what you gotta do. So I usually, when I travel now, I will take significantly less than what I do at home. I prioritize the supplements that matter the most to me and will have the biggest impact. And I also will look at what is travel friendly. When I travel internationally, I take my proper supplements in their bottles because I know that I'm going through security screening. When I'm traveling domestically, however, I'll often pop a lot of supplements just into some little Ziploc bags and take with me, especially if I'm only traveling for a couple of nights. And when I do that, I'm really picky with the supplements that I'm choosing to make sure that I'm not selecting anything that is going to be like it have like a gel filling, anything that could burst, or if it got crushed, it's not going to explode everywhere in my bag. Secondly, is plenty of pain relief. I get a lot of migraines and headaches with my illness, and I don't take anything too strong. Uh, I'm Australian and here to very easy things to access a penadol and neurofin. I find migraines hit so much harder on the road. And if I'm traveling alone, it can just stop me in my tracks. So having that extra pain relief for me is really important. Next up is snacks and emergency meals that I can trust. If I'm on the road and I'm not feeling well, I need something that is clean, that is easy. So usually day one of landing in my destination, I'll try and find a supermarket. A lot often these meals will include fruit as opposed to processed sugary things, but it depends on what phase of my illness that I am in. If I am feeling pretty good, I'll just have some standard snacks on me. But if I'm feeling pretty unwell, I'll usually stack, I'll usually stock up on nuts, fruit, and things that are fresh that I can prepare and take with me each day. Next is a filtered water bottle. You don't want to be drinking risky water if you're already not feeling well. So filtered water, clean water is really important to me always, as is hydration. And finally, this isn't technically in a kip, but it is something that I now plan. Is that when I'm not well, I will plan a buffer day at the start of the end of my trip to make sure that I can recover from the actual travel itself, especially if it's a long haul flight. I have had some pretty epic adventures over the past few years since I've been diagnosed, but there were a couple of days in there that felt like absolute hell. Let me share with you probably my worst travel day and what it taught me. For me, one of the absolute worst days that I had was traveling in the Greek islands. We were in Milos and I woke up in the middle of the night so unwell and it came out of nowhere. What I didn't realize at the time is that I was suffering from undiagnosed SERS. I also had an undiagnosed parasite that I'd picked up somewhere along the way. I had gut issues. I had just gotten over, I think it was a cold at the time as well. I woke up in the middle of the night and I was so, so sick and I was throwing up and I couldn't work out what was going on. And we had a family boat trip planned the next day. Now, I also don't want to condone going out in public and doing things while you might potentially be contagious, which is not what I thought that I had here. But I was really unwell, and we had a family boat trip the next day around Milos, and it was the day that I had planned that I was so excited about. Everywhere that I'd heard about this trip, everyone had said that it was their favorite day in Milos. And so I was really looking forward to it, but I was so unwell. So my my family all did say that this was their best day of their entire trip around the Greek Islands. For me, what this day was was me curled up inside the boat under a pile of towels because I was shivering and I was barely functional. So I was there physically, um, but I was so unwell. At one point the boat stopped and everyone got out and there was swimming and snorkeling, and I was encouraged by my mother to get up and to go outside, which I did. And I think I was out there for maybe five minutes, and I tried really hard to take a couple of photos, and I think I got, you know, I was in one photo on the boat, and being unwell is one thing, being unwell on a moving boat on the water is another. So it was stunning, but that was enough for me, and I had to go straight back inside on the boat, back under my pile of towels, back into the fetal position, and just curl up and try and get through. It was gut-wrenching to have planned this perfect day, the highlight of the trip, everyone's highlight of the trip, knowing that I missed out because I was so unwell. I didn't know about my illness at the time. I was clearly dealing with a lot of symptoms, but I've learned so much since that day. And I've had other rough days since then, especially with really bad migraines, days where I thought I was gonna throw up, or days where I felt like passing out all day. And I've just learned to cut myself some slack and to speak up and let my travel companions around me know what I'm feeling and what I'm experiencing so they can be there to help. So, can you still travel with a chronic illness? Well, the honest answer is it depends. It depends on you and your illness, and that is not up for me to give any opinion on. But for me, often the answer is yes. But travel looks differently now. I choose trips that are aligned with my energy needs at the time. Sometimes that is the big bucket list adventure that I had planned, the active adventure, but sometimes that means choosing an off-grid tiny house day, uh, a cabin in the woods style journey that just helps to nourish me and reset instead of burn me out. It might mean choosing a group tour where all I need to do is show up and I don't have to do any of the planning and I don't need to think about it. And sometimes it might be an all-inclusive option where I really don't have to lift a finger. I give myself permission to redefine what a great trip looks like and also give myself permission to say no. And that's a lesson that took me many, many years to learn. Sometimes it's saying no to going to dinner with friends and saying no to a part of the trip that you are actually looking forward to, because for me, my health is worth more than the experience. I choose to adjust the pace of my adventures to honor my body when I need to, and also I choose to go anyways because travel lights me up, and I'd rather do it sick than not at all because I get so much joy out of it, and for me, it's worth it. Chronic illness has taken so much from me, I will not allow it to take this to take travel, something that I love so much. If there's one thing I want you to take away from this episode, it's that chronic illness doesn't get to decide whether you live a full life, it just asks you to live it differently. You're allowed to travel slower, you're allowed to rest, you're allowed to choose ease over intensity, and you're absolutely allowed to keep dreaming about the places you want to see. If you want to read more about how I travel with a chronic illness, I've shared a link to my blog post in the show notes. Thanks for being here and for letting me share this part of my story with you. I'll see you in the next episode. Thanks for tuning in to the Tourist to Traveller Podcast. I hope today's episode has inspired you to travel more authentically and plan your next adventure with confidence. Don't forget to head to touristtotraveller.com for today's show notes, resources, and free guides to help you plan like a pro. And if you love this episode, please hit subscribe and leave a review. It helps more travelers like you discover the show. Until our next adventure.