Tips on traveling with a CHRONIC ILLNESS 

You should make a video about dating and chronic illness. That would be cool. I've never accepted love since my POTS diagnosis; I'm a bit ashamed I guess. Would be great to hear your thoughts on the issue.

I went with one of my oldest friends to Maui in May. I let her know far in advance that I cannot do anything that's going to push me past my limits. She was claiming that she would help me up until we got there. Then she watched me struggle time and time again and seemed annoyed. I slept for 16hrs when I got back home! Needless to say, I haven't spoken to her since. I also fell every single day I was there and got a double concussion from said falls. I am going back with my husband and family in 2 months to have a re-do of this traumatic trip. At least I know my husband will be there to help me every step of the way!

This video made me cry. Just to see there’s others out there who’s health effects them in the same way and to the same extent. Thank you. xXx

if have food restrictions and you don't speak the language very well, I recommend making "food cards" in that language that outline what you can and cannot have. you can print them out and give them to restaurant staff, and if you're grocery shopping, knowing the words for ingredients you can't have is so valuable!!!

My favourite weird hack if I don't have a lot of time somewhere, but also am really low on spoons, is finding a hop-on, hop-off bus route. Even if I don't have the spoons to ever get off the bus and explore anywhere, you drive by some of the coolest places in any given city, and the commentary teaches you about the sights you're stopping at! Plus, they often have deep discounts if they're trying to fill up a bus. Worth checking out on some trips! Saved me a LOT of walking in both Toronto and in Dublin, in the past!

I am a 12 year old with POTS and EDS. Helping with information and idea for medications is so helpful! I’ve used salt sticks from a year now and never met someone who has heard of them so it was really nice to know someone also likes them. I’ve watched several of you videos and can connect to almost all of them. Every point that you Mentioned I have thought about or discussed. Thank you so much for being a support that I need while growing up and learning about my diagnosis!

Girl I’m literally traveling the end of this week I needed this video, THANK YOU!!! Love your content

All of these tips are great! I started using Airbnb not that long ago and I’m never going back. Hotels aren’t great places for relaxing. Not just the food situation (which is a major point) but there are rarely good places to sit other than your bed. Airbnb’s are like staying in a real house, it’s comfortable and cozy and it’s so much easier to unwind. Plus there really are more location and budget options! I also feel like I’m supporting a small business by staying in someone’s Airbnb instead of a chain hotel.

I also love traveling walking is difficult tho

I'm really sensitive to movement since I have endo and eds. I bought a 'pelvic pain solutions' cushion and it cut down on bumps and movement on planes and cars! Also helps the low back pain from driving. I highly suggest it for anyone with chronic pain. They have a travel one that folds in half.

When you are part of a big family (aunts, uncles, cousins included), your immediate family will forget who is allergic to what, especially for the cousins, even though allergies run in our family. For my family, we end up changing menus last minute. So now, when we do a 40-people travel, we take a representative of each family to plan out the trip, since we know the allergens well within our family. For a December trip, we start planning in January that year, putting everyone's needs into consideration. My sister has fibromyalgia and CFS but she is high-functioning, but we do travel with our granduncle and grandaunt, so we try to avoid hiking unless they can speak the language. Usually in Asia, people can carry you up if you are tired, which really help my grandaunt/granduncle or my sister if she has a bad fatigue day but she doesn't want to miss out. These are easier with a tourist agency and a tour guide. I don't know how many people relate to this.

Perfect timing!! I’m getting ready for out of state travel and have been stressed due to the complications my health conditions cause. So excited to hear your tips 😌😌😽

Thank you so much for making this. I have UC and am tied to Humira. Prior to my diagnosis, I worked very hard to position my side hustle in a way that would allow me to live and work abroad. And then I got sick. And now it's been hard to even imagine being able to leave the country- even just for a short while. But maybe there's hope! 🖤 I hope you've been feeling well and able to continue with your travels 🖤

Your video is the first one that I have seen on traveling with chronic illness. Such great advice. Def. was a good start to relaxing my anxiety and I am sure others as well.

The last part about being nervous with friends was so validating, as is your anxiety. I'm also one to love travel and have learned some of what you suggest, but have picked up more tips from you! I'll add my variation (MCAS, HyperPOTS, Vasovagal syncope on bad heat days, Gastroparesis, likely EDS, now Degenerative Disc Disease) and a dozen other lesser things. For me, I love hotels with mini-fridges (the empty ones, not the mini bars where it's full of overpriced foods.) I find a hotel near a CVS/Target/Wal-greens and stock up on my beverages. I love FULL, unapologetic temperature control a hotel room gives me vs the unknown of an airbnb. I eat the same protein bar every day for breakfast so I just bring enough for the travel days so for me breakfast in a hotel is not even something I bother with if it's one of those free breakfasts. I also love the hotel privacy - a tip, just always leave the "do not disturb" hanger and you can be in the room any time of day. I have a Wal-Greens pill container that is AM, Noon, PM, bedtime and you can bring just the "day strip" with you, for however many days. I don't need the noon one, so I put extra meds I may want in there. I also have 5 ounce screw top water bottles I pre-fill my water in for my every-3-hours Cromolyn Sodium needs so there is never a worry I won't find water, or it's a huge bottle that I can't glug down (thanks gastroparesis.) Final lil tip, for me personally, a couple years ago, I "gave up" on "eating local" or finding quirky food. Travel literally stops my GI system entirely, and my mast cells get super pissy with me as does my norepinephrine levels with my HyperPOTS. With my gastroparesis I can't eat much volume anyway. Simply put, I will eat at chains like Chipotle, every day if need be, because it reduces the unknown of my body that is already ravaged by "daring" to have fun traveling. It's been liberating because I grew up with super hippie liberal foodie type friends who always, even before it was trendy, liked to seek out really funky places... so I have this thing in my head that they are superior human beings for doing those adventure restaurants. But nope. My body needs as many familiarities as I can give it when traveling. I just bought those salt pills and am super excited to give them a try! I'm not a big salty foods person but I'm confident it'll help me feel better. :-) Sorry this is so long but if it helps one person, then I'm happy. Our bodies are so exhausting and we need each others tips!!

I have a hard time riding long periods in a car. I loved having space for my medical things when I have traveled by car. But Having to stop to stretch every hour makes the drive so much longer. I only traveled by plane once. I was really worried about being able to bring everything I might need for my health. That trip was to Las Vegas. I happened to be there when the mass shooting happened a few years back. I had an extra day of my meds along. I'm very glad I did because I was delayed a day to get home. Now I don't know what would work for me. :( I'd love to know how you choose what to pack for travel by plane.

Yeah I do that too, when I know I'm going to a town/city I research every menu of every restaurant or cafe in the area I'll be visiting or staying. Even if the menu changes you can usually tell from the menu how allergy conscious they are. One of the most important lessons I learned was not to compare myself with well ppl. So when this applies to travel, to not get down on myself if I need to stop for a few hours or even a day. When I travel I just like to go and go so remembering to listen to my body and how it's coping is so important when I'm traveling (although, seeing travel days ie - days traveling to a new place, as an excuse to rest is helpful)

The AirBnB tip is such a good idea!

The thing that made the biggest difference for me was getting a wheelchair. Since I don’t need it every minute, we can usually work around minor accessibility issues. Like I can walk up a few steps and my husband can fold the wheelchair and carry it. Another thing, if we’re just interested in spending vacation time as a family (as opposed to a specific destination) we choose places like Disney World or an all-inclusive resort. Disney is super wheelchair friendly. Resorts allow you to stay in your room, choose activities, meet up throughout the day. I know that’s not viable financially for everyone-for a long time, it wasn’t for me either. But I’m in my 50’s and my husband has had a lot of professional success in the last few years, so we are lucky to have those options. Campgrounds offer a lot of the same benefits. I appreciate the idea of Air B&B. In the U.S. we usually stay in Embassy Suites motels, which have a small kitchen (because we have travel points there), but I hope to go abroad again in my life and Air B&B opens up a lot of possibilities. The idea of being able to control where, when, and what I eat, and having a place to rest if I need to, makes me more optimistic about that possibility. I want to agree with the commenter who said you should always bring your original prescription bottles when you travel abroad. You can just take the number of pills you need and leave the rest at home, but bring them in the bottle. Even for US trips, I recommend this. I’m a retired lawyer; I’m right about this. You’ve been lucky to never have a problem, but things can happen. If you’re unfortunate enough to be somewhere where a riot breaks out, or travel restrictions are suddenly put in place (which can happen to literally anyone) you may be detained, and you need to be able to document your medical needs. Or if you need to be hospitalized. Or if a customs officer decides to be a dick. It’s better to be prepared and never have it come up than to be unprepared for the worst case. I always bring ear plugs, a sleeping mask, and a soft sweatshirt (can act as pillow or blanket) in case I desperately need to sleep wherever I am (libraries are excellent for this purpose!), and if I have room, a cervical collar so I can sleep sitting up if necessary without killing my neck. And that ankle brace I only need maybe once a year? Assume this trip will be the day I need it. For plane rides or long car rides I also bring some of those disposable heating pads that you wrap around your waist. I tend to have a lot of luggage, but it’s all on wheels and it saves me not only from being extremely uncomfortable but also just from worrying about being uncomfortable. Pain is a spiraling situation for me usually, so I carry every tool I have to prevent it or mitigate it. Thanks for listening to my Ted Talk, lol.

Thank you so much for sharing.

Great tips!

Thank you so much for the amazing tips! Really helpful info! 😀

going on a weekend trip this week, my first vacation in years! and my first ever time using my wheelchair 😅 very nervous but also excited because I know i won’t be in too much pain you’re physical health should ALWAYS come first! don’t be afraid to use accommodations you need! you CAN do things with disabilities! i believe in all of you❤️

A family trip on a cruise worked great, we could do things together or on our own. I could go back to room and rest or go eat when I needed. We would meet up for a group meal and chat about what we did that day.

These are so helpful and also I love your personality💗💗

I totally needed this video.. I have needed a vacation for awhile but traveling is extremely tough for me ❤

Thank you so much !!! ❤❤This gives me hope I can do the things I like.

Great video! We have similar health concerns and I find travelling quite stressful especially in regards to food :( Really nice to hear the perspective of someone else who has to think about these things and can’t just do travel on the fly!

I loved this video, thank you Izzy these tips are really helpful ☺️

Thank you for this video, Izzy! I’ll show it to my family and friends who struggle with understanding my chronic illnesses and why sometimes I absolutely hate traveling! Love your content ♥️

THANK YOU FOR THE PILL CONTAINER SUGGESTION!!! I’m flying out Thursday and this is so much better than the daily pill thingy. I have to take way too much to ever make those daily ones work. You’re a rockstar!

Thank you for your tips! This is so helpful as someone with POTS and MCAS. Please keep making them!!!

This was so helpful! I developed POTS in Sept 2020, found your channel in Jan 2021, and got my diagnosis 6/30/21! You're awesome, Izzy! :)

Could you maybe do one for plane travel and airports? I love your vids!

I’m legit traveling in a few weeks!

I wish I saw this when you posted it lol, because a few weeks ago my husband and I drove to Dallas from Milwaukee for a work assignment and I really wanted the chance to have an adventure so I went with him, only to have to stay in bed every 👏 single 👏 day 👏, either from PoTs from the heat or my neck literally falling apart and I was so discouraged. I think I needed to realize how bad it was though because I have since gone to a chiropractor who has worked with EDS and he's super careful with me and from 2 visits already I feel FANTASTIC like I can rock the world (for 15 minutes) lol. Thanks for what you do! I've been wanting to start a channel soon myself.

Thanks for posting the video! You always have practical and useful information Izzy : ) This may be an option for some of us chronic illness warriors. If you are able to rent (if you don't own) a RV travel trailer (or motorhome). This worked for me in the past. You have a place to rest and make meals in your own setting. Find a camp ground that has on location amenities that you may be able to do ( or for your family). I look for places at most few hours away. Many have amazing on-site amenities such as pools, hot tubs, mini golf, a cafe and even some resorts have massages. We stayed at one where it had its own mini beach and place to kayak(I watched). This was the only way I was able to enjoy a vacation getaway with my family. I couldn't join in the activities but I was with them most of the time and could rest in my bed while they were close by. We also had a golf cart to ride around in so I didn't have to walk. My health has declined recently so I may not be able to do that this summer. Hopefully I will improve and ride in a car soon.

Great tips! I do some already but have some new things to try, thank you! For anyone with major dietary issues I have some tips. I bring a smoothie blender to make sure I eat the right breakfast and bring key ingredients. You can find powdered versions of things like avocado and almond milk which can make it through customs when fresh won't. When I was really sick I traveled with a whole cooler of frozen food, the downside is the containers were plastic to reduce weight. As long as your travel time is only a few hours, everything stays cold enough. I also plan for grocery shopping and cooking the first evening and get it out of the way.

Izzy, appreciate your hEDS info, it helped a newbie a lot. I too use pill boxes for domestic travel, but would caution you to leave pills in original containers when travelling across an international border. If you are stopped at customs, the best case is it will be a long wait for your pills to be evaluated for potential unallowed materials and will be a long delay after a tiring flight, worst case you could be detained or deported for something OK in the US but not OK at the destination. Pseudoephedrine (nasal decongestant), for instance is OTC at home but would be an offense in Japan. You can always re-stock a pill container at your destination for convenience during the day but keep the original containers in your hotel.

Helpful! But I still don’t expect to be traveling much of anywhere anytime soon. I like packing food so I know there’s always something I can eat

Love this! Thank you so much, Izzy! My husband and I try to go on a little vacation for our anniversary each year. Being recently diagnosed with POTS, I'm scared and was thinking we'll have to skip this year (end of August), but you have given me hope that maybe we can still get out for a few days! Thank you so much for sharing what helps you. Can't wait for your other videos on traveling!!

I know how you feel because I'm bedritten most of the time due to lyme disease and severe case of bartonellosis which sucks considering that I was very active before that.

Fellow chronically ill traveller here, loved your tips!

You’re brave. I wouldn’t travel at all if it was me. I don’t travel anyway; maybe I should after pandemic.

In my case, traveling is more simple since I always travel alone. No relatives means no one to explain things to, & no issues with a companion not understanding my conditions. Having said that, you're right: Owning a car makes all the difference. My last one started dying mid-2020...gotta get another one when it's feasible.

amazing vidoe i enjoy cool tipps youa re so pretty

Great tips! Could u possibly post the link to those portable pill box organizers?

So early!!!!!💕💕💕

I would like to add that people shouldn't be afraid to use a wheelchair. Using a wheelchair is freeing and allows me to be able to shop and be about for hours instead of minutes. It really lets me enjoy doing things, and it's easy to use. Many people are ambulatory wheelchair users, which means they can both use wheelchairs and walk. They make traveling, shopping, and going out a different experience entirely.

Some countries won't allow entry if some people have the magic johnson. Some people choose to get a letter written by their doctor stating they have been prescribed medication treating a chronic illness. I think it's good to ensure no labels make it clear what medication is for.

Hi Izzy! I have a problem, and I thought maybe you would like to give some tips in a video like this. (Loved this one) I feel quilty for being sick😅 When I can't make coffee for my husband because I feel sick because of EDS/POTS, I feel quilty.. And therapy doesn't really help😬

I am traveling to Las Vegas in June for a sports tournament with my daughter and I am PETRIFIED. Chronic illness makes everything so much more difficult. I needed to get airplane seats with more leg room and I need the aisle seat. I don’t have a schedule of our games so everything else is up on the air. I have been to LV twice, before I was blessed with chronic pain, and there is SO Much Walking. I just don’t know how I will manage. So if you have more tips, bring them on!

Used to have gastroparesis? How did you make it go away?

So I recently got diagnosed with Ed's and I would love some tips my elbow will lock into place and I will have to pop it, my knees keep subluxeing and I dont know what to

Great video! Do you have any tips for mid-hike crashes? My sister sometimes has these and I hate it for her and would love to help.

im traveling for the first time since covid this week!

is there a vid on managing uni with eds and pots, currently having issues ... ?

How did you get rid of your gastro paresis? I have that and it is honestly hard to deal with because I have a hard time managing small meals through the day….

Any tips for a POTSie who can't drive ?😅😅 I have seizure activity and pass out even sitting so that's why I can't drive

❤️❤️❤️

THANK YOU for this. There is literally NO info anywhere about how to travel with chronic illness and since getting sick with ME/CFS I've not been anywhere and it feels terrifying to try. I have a couple of short trips planned now and these tips are SO helpful!

I’m going to Croatia with my boyfriend and some friends. I am really anxious since they don’t really unsterstand hEDS and the other disabilities i have. We will have so sit in the car for 8 and a half hours. They are all very active. Plus I’m the only girl. I can’t tell you how scared I am that they won’t understand and make fun of me or get annoyed of me. I’m just hoping everything will be fine.

Izzy, have you ever taken a cruise? If so, do you recommend it?

"you need a family who understands and wants to help out." Where do I sign up for that? 😅

Hello✌

it's not that you USED to have gastroparesis Izzy. I guess I know what you MEAN. But, a chronic illness like that doesn't "cure" itself like what you, Jaq and her friend Janiece (The Raw Life), and The Frey Life, and Amy Lee Fisher. (RIP to Amy and Jaq) would all say. Instead you are very fortunate and have found a good regimen, a good treatment for gastroparesis, and have gotten a better quality of life in that aspect. And that's fantastic news. But it doesn't actually ever go away. I've also been told this by my doctors. It's like asthma. Asthma can be barely anything if being treated right, and some people have less severe cases. And your case can get worse, and be well managed with medication, and in some rare cases you can get off some asthma medications because your able to manage symptoms without them again. But asthma never truly goes away.

Can you fly with chronic illness?

Great tips!