A friend of mine with Long Covid recently went abroad on holiday and before she left, she and I had a chat about things she needed to consider before leaving. Julie runs her own podcast, so she and I are going to do an episode on this, because we both thought it might be helpful, but I did think it might be useful to jot down some notes, in case anyone wanted to look at them later. This advice is over and above any else, for example visas and the like.
Being disabled or having a chronic illness does not mean you cannot travel. In fact, you’ll probably find that your GP recommends it, as getting away for a break does everyone good. That said, you will need to think about anything that sets off your conditions: For example, if you’re allergic to sunlight or heat/humidity triggers symptoms, you might need to think about where you’re going or at least how you’re going to manage it.
Here follows some general advice about this - it’s broken down into separate sections: Before You Go, While You Are Travelling, While You Are There and After You’re Home.
My first and most important point is that you absolutely MUST think about time to recover from your journey, both outward and return journeys. If you are working, I generally recommend starting and ending leave in the middle of the week, so that it’s not such a rude shock when you go back to work! You might also find that this is helpful in respect of slightly cheaper travel options too, but if you’ve got kids, this might not be possible. Also, especially if you have mobility issues, think about how accessible overall the place you’re going is. It’s no fun to discover your hotel has no elevator, for example, or a lot of stairs outside etc.
Before You Go
1) Book Special Assistance. Whether or not your condition is hidden or not, whether it’s intellectual or not, Assistance (walking or wheelchair) is exceptionally useful at the airport. Even if you do not use a wheelchair, remember that airports/stations are HUGE and it’s easy to get tired very quickly. You will be prioritised through passport control and security as well. Not having to stand in long lines is fantastic. A special note here is to organise this BEFORE you go: You might book your flight with one provider, but if they use partner airlines/companies, you will have to contact each company separately, for both outward and return journeys. Especially if you are changing planes. You can do this by sending one email with your flight(s)/train etc details to all the email addresses at once. The benefit of that is that each company should then know. The downside is one company might assume another is doing all the organising. I would recommend chasing each company up if you do not have proper confirmation of arrangements. NOTE: Special assistance usually requires you to arrive at the airport well ahead of time. Plan for this (and see my point about lounge access).
1a) If you have any dietary requirements, now is the time to speak to the airline. You may be able to access (but might have to pay for) pre-booked meals, which might be important if you have specific dietary requirements. Bear in mind your preferred meal might not be available on the flight.
1b) Definitely think about where the loos are and leg room when you’re booking. It’s better to pay for a pre-assigned seat than get randomly assigned one that’s completely unsuitable.
2) Contact the resort and/or any places of interest/theme parks etc before you go and ask them what arrangements are in place to support disabled or chronically ill people. Ask them what evidence they require. They will usually give you detailed information about the support they give. Some places may give discounted entry or free carer tickets, but this is likely to vary. In theme parks, on presentation of the correct evidence, you may find you get special access to rides and so on. They will normally give you instructions on what to do on arrival. Some theme parks also provide wheelchairs and other mobility aids for a deposit - check this out before arrival so you know what you might need to take and what you can leave behind. It’s also a good idea to check about general accessibility, eg how much is flat, what places are stair access and so on.
3) Check the entry requirements of any country you are entering. This is especially important if you are on medication as many countries have strict restrictions on what you can take with you. Most will allow you to bring in what you need for your trip, but no more. Some countries will not allow some medications under any circumstances. Check first. The country’s embassy website is normally the first place to check, but if you cannot find the info you’re looking for, it is important to email them and ask. You don’t have to give a medical history, but if you’re on anything like sedative or opiate medication, you should do this. It’s better to be honest about your medication. I’ve generally found that the most contentious medications are things like antidepressants, painkillers (especially opiates) and things like benzodiazepines. It’s better to be safe and list everything when asking for advice. You should ask for this information to be treated confidentially.
3a) Medication usually has to be carried in or with its original packaging. If it comes in blister packs in cardboard, my pro tip is to take what you need for the journey + one or two days and keep it alongside the flattened box. If it comes in a tub, I’d strongly suggest speaking to a pharmacist, as they might be able to sort you out smaller tubs etc for travel. Figuring out I could flatten the cardboard boxes has saved me SO MUCH SPACE in hand luggage!
4) Gather your evidence in advance. You will most likely find that you’ll need some kind of evidence for airlines, train companies, resorts and the like. You will definitely need this for taking medication to many countries. In my experience, although there is a charge for this, the best thing is to get a letter from your GP. On it, ask for your conditions and medications you take to be listed. Bear in mind that there is usually a time frame travel companies, resorts etc will accept, even if it’s just for conditions, so make sure you are aware of that. Some countries will ALSO require you to have a prescription with you, detailing the drugs, but your GP should be able to issue this (note: this isn’t normally the bit with what repeats you are on. It’s the full, two page thing you’d normally take to the pharmacy). I would always keep this safe and scan a copy of it. Yes, it’s likely to cost you, but this is part of the costs of being disabled.
5) Get travel insurance and be honest when talking to the company. There’s lots out there and yes, it’s likely to cost you more. Depending on if you intend on travelling more than once in a year will determine whether or not a single or multiple trip policy is more cost effective or not. It is VERY important to be completely honest with the company as they are likely to refuse to pay out for something that happens that you’ve not told them about beforehand, barring accidents (and the accident would have to not be related to a pre-existing condition). I always go for the best cover possible.
6) Considerations for while you are travelling include distance to the departure point - station/airport, time of departure and how long you will be waiting in the airport, as well as what facilities there are there. If you have a ridiculously early flight, rest is important, so staying the night in a hotel or similar IS something to think about, so you’ve got as much rest as possible. If you’re going to be spending a lot of time in the airport/station and don’t have lounge access as part of your ticket price, I would definitely recommend treating yourself, as there’s usually lots of perks, sometimes including showers, drinks etc. this will depend on whether or not there’s a pandemic on though! Be as rested and comfortable as you can.
7) Other things you want to think about are things like earplugs that help with pressurisation for flying, noise cancelling headphones, decent flight socks and if your GP recommends you take any medication to help prevent DVTs etc. if you are travelling economy, you might want to look into something called a “foot hammock”, which you can hook over a tray table and rest your feet on.
8) Accommodation and Transfers: It is generally a good idea to ask ahead at the time of booking (and follow up) about rooms that suit your needs and any aids you might need. I’ve landed up in a quiet room which requires too much walking to and from. Not fun. Many hotels will also be able to provide some aids or properly accessible rooms. Sorting it out before you go saves headaches (and gives you some clout if things go wrong). I definitely recommend booking any possible transfers between stations/airports and hotels in advance. Check what instructions you need to follow to make sure transport shows up when it should! Another thing I have become a huge fan of is inclusive resorts or those where you can buy a meal plan of some kind. Again, if you’ve got dietary needs, contact the resort/hotel etc beforehand.
9) Mobility Aids - I am going to come right out and say this. Friends of mine who are wheelchair users have had a fairly awful time of it, whether it’s damage, loss or even airlines using their aids for other people. You can buy specialist cases to try and mitigate this, but they’re pricy. I’m lucky enough to be able to get away with a stick, so I carry a folding one. You can even buy folding crutches. I mind less about airlines taking my crutches from me when I board an aircraft to store - they’re pretty robust. I also tend to travel to places where I will be staying with friends, so the likelihood of my being able to access a “borrowed” rollator is much higher (it’s already in place for a forthcoming trip to Portland in the next year), although mine does actually fold right down and can go in one of my duffel bags.
While You Are Travelling
1) Always put your medication in your hand luggage. All of it. Keep it with any paperwork (see above) you need. Another aspect of travelling on meds is that you usually have to have the medication in its normal container. My pro tip is to take only what you need and then flatten the packaging (if possible). This works fine if you’ve got blister packs, not so much with tubs. See above. Make a note of any time difference adjustments you will need to make.
2) Keep well hydrated. Avoid fizzy drinks if you’re flying.
3) have some sweets to hand. I like the hard kind and don’t leave home without ginger candy of some kind, but that’s because it’s good for flying and nausea.
4) Dress comfortably, especially shoes and carry a large enough scarf or shawl that covers your top half. They take up little space and are useful on long flights. Even relatively lightweight. A pashmina type works very well.
5) Let your crew attendants know about any help you might need. They will be aware you’re on board. This will also prove useful at your destination, when you’re waiting for special assistance. If you find you are having any issues, especially with unsympathetic special assistance (oh yeah, that’s happened to me), the crew can be amazing. There is a reason I always buy something for flight attendants if I’m going on a long haul flight - it’s because one Irish airline were amazingly supportive after I was let down badly by Special Assistance at my destination one time.
6) Be prepared; for delays, for boredom. My minimum in my hand luggage is always a wipe for my face, moisturiser, toothbrush and toothpaste, lip balm, comb and deodorant. Plus spare (under)pants and socks. I don’t travel without my iPad, phone and charger and the relevant travel plug etc. plus notepad and pen and medication, obvs. If you need things like a stick for mobility consider packing a folding one. Also consider weather - if it’s going to be outrageously hot or wet at your destination, be prepared. I definitely recommend a black or dark coloured umbrella (useful in rain, doubles as a parasol).
While You Are There
1) Try and make a plan for what you want to do and definitely look into planned excursions, just be careful what they involve. I enjoy city tours on buses, as I don’t have to walk, get to see lots and if I do have the energy, can choose to get on and off some to go into museums etc. Going to a theme park? See my point in Before You Go.
2) Don’t forget to rest. On one trip to Turkey, because my sleep was completely awry, I was usually up with the larks but then would have a good nap late morning and early evening, if I didn’t have any particular plans. I also, on medical advice, spent a lot more time reading and resting by the pool than I ever have before.
3) Take into account any possible time difference. Check out advice on how to manage this online. Depending on the direction of travel will affect you on different legs. I live in the U.K. and if I’m travelling to the US etc, I’m usually fine on the outward leg and not so good on the return leg. If I’m adding hours, ie heading to Turkey etc, I’m usually not good on the outward leg, better on the return. That said, as I absolutely cannot be up after midnight anymore, this makes things more complicated.
4) Don’t plan to do anything the first day. At least. Use this to recover from your journey. If you are planning on doing anything, make sure it’s relatively close to your accommodation.
5) If you are unlucky enough to need some kind of medical support while away, be sure to call your insurance company first and ask for their assistance. Trust me when I say that it’s not like simply calling an ambulance or even showing up at any hospital overseas. I worked in Spain and having to make this point to my customers - they they needed to call their insurance line unless it was literally life or death (in which case, call an ambulance) or face excess costs. If you attend the wrong doctor or the wrong hospital, you might be left liable for full costs. It is always worth checking the small print on your policy before you leave. The policy will also detail what they will pay for direct and what you might have to pay for and claim back (or not).
Obviously, your return journey is the same as before, but I ALWAYS suggest a call or email to the airline etc about special assistance for the return leg.
After You’re Home
1) Make sure you’ve allowed yourself enough time to recover. You’ll know yourself best and it’s a good idea to factor this into your annual leave, if you’re working. If a time difference is involved, a couple of days minimum is going to be needed.
2) Rest, rest, rest and try and get your sleep back to normal as soon as possible.
3) Hydrate
4) if you feel it’s warranted, say thanks to people who supported you. Honestly, people do like feedback. If something went wrong, provide feedback. Positive Feedback is actually useful to people’s employment files. Like I’ve said before, one Irish airline was so amazing I’ve used them ever since for long haul to specific places and I always email them if someone went above and beyond, as well as take a little something for the crew & attendants on each flight.
5) Check what plans you have once home and adjust them as needed. Listen to your body.
Unfortunate Downsides
There is no point in denying this: Friends of mine with disabilities etc have had a horrible time when travelling. For the most part it’s arranged special assistance that has not been in place where and when it needs to be. I have had a horrible time of it myself, being treated appallingly at Dulles in Washington on arrival after a long flight and refusal to provide me with the assistance I needed. I also know friends who have had mobility aids damaged. It is something that you need to keep in mind. Vastly unfair, but the world is not particularly accessible. You can travel, but you need to put the energy into planning with military precision and also accepting, if you have a fluctuating condition, that you might have to change plans at short notice and that this might cause problems, such as if you have tickets and can’t change them. But go!
Special mention to Aer Lingus, whose flight crew found me sobbing in arrivals after I was denied special assistance in Dulles on the grounds I could walk. They walked me through to baggage and post-arrival security and made a formal complaint about everyone who had been absolutely awful to an autistic person. This is why I tend to fly with them and always take something for the crew. These days, I can’t actually walk far, so it’s wheelchair assistance or I don’t go.
I hope that’s been a long, but useful, blog post on travelling with a disability or chronic illness. It’s based on my own and others’ experiences.
PS Forthcoming post about the finishing of my regency stays!
