The Spoonie Mummy

Just a reminder that I am not a medical professional and this blog post is based on my personal experiences. If you need medical advice or assistance please see your doctor,

Travelling with a chronic illness can feel like a military operation sometimes. There are medications to organise, medical supplies to pack, mobility and accessibility to think about, airport security to navigate and the constant question of “What if something goes wrong while I’m away?”

But having a chronic illness doesn’t mean you have to give up travelling. It just means you may need to travel a little differently — and, importantly, give yourself more preparation time and more grace along the way.

Read more: My Top 10 Tips for Travelling Abroad with Chronic Illnesses and an Ostomy

I have taken my first two trips abroad this year since having my ostomy just over 10 years ago!

These are my top ten tips for making travelling with a chronic illness a little easier.

1. Contact the airline before you fly

One of the best things you can do is contact your airline well before your trip and explain what you need.

Don’t assume that the standard baggage allowance is all you’re entitled to. Depending on your condition and the airline’s policies, you may be able to request additional baggage allowance for essential medical equipment or supplies.

This is particularly important if you travel with things like ostomy supplies, medical devices, specialist equipment, medication, nutritional supplies or other items that you simply can’t travel without.

Ask the airline specifically:

• Whether essential medical equipment can be carried free of charge
• Whether you can have additional or excess baggage for medical supplies (and check how much weight they can give you)
• Whether you need a doctor’s letter or other documentation
• Whether you can take medical equipment into the cabin
• Whether you can request airport assistance
• Whether there are restrictions on particular medical items (also make sure you check the country you are travelling to’s rules)

Get confirmation in writing if possible. Having an email from the airline confirming your arrangements can be incredibly useful if you’re questioned at the airport.

2. Keep your medication in your hand luggage

My general rule for medication is simple: don’t put anything essential in your checked luggage if you can avoid it.

Bags can get delayed or lost, but you still need your medication.

Keep your medication in your cabin bag, in its original packaging with the pharmacy label intact. You should also carry a copy of your prescription with you. For some medications you may also need a letter from your doctor, for instance my injectable medications require me to travel with this.

And don’t pack exactly the amount you need for your trip. Take extra where possible in case your return journey is delayed or something unexpected happens.

If you take medication that has specific storage requirements — for example, medication that needs to be kept refrigerated — check the airline’s rules before travelling and make a plan for keeping it at the correct temperature. I have a special bag I ordered online, which my rheumatology nurse suggested – it is often advertised for insulin but can be used for any medication that needs keeping in the fridge.

Most importantly, check the rules for the country you’re travelling to. Medication that is perfectly routine in one country can be subject to additional restrictions in another.

3. Pack your medical supplies like you’re expecting the unexpected

If you’re travelling with medical supplies, it can be tempting to calculate exactly what you’ll use and pack that amount.

I’d recommend doing the opposite.

Always pack more than you think you’ll need.

Travel days don’t always go according to plan. Your luggage could be delayed, your trip could be extended, you could use more supplies than usual, or you could simply have a flare-up.

For ostomates in particular, I like to think in terms of “What would I need if I couldn’t access a shop for several days?”

Split your supplies between your cabin bag and checked luggage if you have enough to do so, but always make sure you have a sufficient emergency supply with you in the cabin.

And don’t forget the less obvious things: disposal bags, wipes, spare clothing, medication, chargers for medical devices and anything you normally rely on at home.

4. Know what to expect at airport security as an ostomate

Airport security can be one of the more anxiety-inducing parts of travelling with an ostomy, particularly if you’ve never flown before.

The good news is that having a stoma does not mean you can’t fly.

Security staff may need to carry out additional screening, particularly if you have medical equipment or supplies with you. You may be asked questions about your ostomy or the equipment you’re carrying.

You can explain that you have an ostomy and, if necessary, ask for a more private screening area.I flashed my bag and had it swabbed flying out of Birmingham. In Amsterdam they took me to a small room , just so they could look at my bag, giving me more privacy. This happened again at Easzt Midlands when we flew out and they swabbed it again. Coming home from Greece, they didn’t do anything different!

You don’t have to feel embarrassed. Security staff deal with medical conditions and medical equipment every day. All the people I dealt with were amazing!

If you are worried about explaining what your stoma is, especially in countries where a different language is spoken, check with your supplies delivery company. I know Respond have produced a small booklet with information about what an ostomy is, in many different languages, which can give real peace of mind when travelling.

5. Request airport assistance — even if you don’t “look disabled”

This is one I wish more people knew about.

You don’t have to use a wheelchair to benefit from airport assistance.

For someone with a chronic illness, a huge airport can involve an enormous amount of walking, standing in queues and rushing between gates. You might be perfectly capable of walking, but still become exhausted or unwell by the time you reach your gate.

If that’s you, ask what assistance your airline or airport can provide.

Depending on your circumstances, this might include help getting through the airport, assistance with boarding, or other accessibility arrangements.

And please don’t feel guilty about using it.

You don’t have to prove that you’re “sick enough.” I wore my sunflower lanyard and was asked at various points throughout the airport if I needed anything, When I was travelling, everything seemed really cal and so no big queues etc. so I was mostly okay. However, when I arrived in Greece the lady there immediately pulled me out of the queue and sent us straight through passport control, which was a big relief as I was shattered, it was late and by then everything ached!

Check out my post on The Sunflower Lanyard scheme

6. Build rest into your travel itinerary

One of the biggest mistakes people can make is treating a holiday like a challenge to see how much you can squeeze into each day.

Wake up early. Sightsee all day. Dinner. Explore somewhere else. Repeat.

That might work wonderfully for some people, but when you live with a chronic illness, your energy isn’t necessarily predictable.

Build rest into your plans deliberately.

You don’t have to spend every minute of your holiday doing something.

A slower itinerary can actually make the trip more enjoyable because you’re less likely to spend the final few days completely exhausted and unable to enjoy yourself.

Think about which activities matter most to you and prioritise those.

7. Get insurance

Hopefully you won’t need medical care while you’re away — but it’s much easier to deal with a problem when you don’t need to worry about paying for treatment.

Before travelling:

• make sure you apply for a GHIC card. It is easy to do online and free.
• research travel insurance and make sure you get a policy that covers you and your conditions.

Don’t assume a standard travel insurance policy automatically covers pre-existing medical conditions. It may be that you need to use a specialist insurance company – I used Staysure for both of my trips this year – but have a good Google and see what is available.

8. Don’t forget the little things that make you comfortable

When packing for a chronic illness, it’s easy to focus entirely on the medically necessary things.

But comfort matters too.

If there’s something small that makes managing your condition easier at home, consider whether you can take it with you.

That might be a particular pillow, heat pack, comfortable clothing, snacks you know you tolerate, a water bottle, compression garments, or something that helps you sleep.

Travel already puts your body through changes in routine, food, sleep and environment. Anything you can do to make yourself more comfortable is worth considering.

9. Give yourself permission to change your plans

This might be the most important tip on the list.

You can plan everything perfectly and still have a bad health day.

You can wake up exhausted. You can have symptoms flare. You can spend half a day in your hotel room when you’d planned to be sightseeing.

That’s okay.

A chronic illness doesn’t care that you’ve booked tickets for 10am.

Try to make your itinerary flexible enough that you can change your plans without feeling like you’ve “failed” at your holiday.

Sometimes the best decision you can make is to cancel the day’s plans, order room service and rest.

There will be another day.

10. Remember that you are allowed to enjoy yourself

It’s very easy for travelling with a chronic illness to become all about logistics.

Medication. Supplies. Insurance. Airports. Toilets. Food. Energy levels. Backup plans.

But somewhere underneath all that planning is the reason you’re travelling in the first place.

You want to see somewhere new. Spend time with people you love. Experience something different. Make memories.

Your illness may mean you have to make adjustments, but it doesn’t have to take over the entire experience.

Plan carefully. Prepare for the things that could go wrong. Give yourself plenty of flexibility.

And then, when you arrive at your destination, try to let yourself enjoy being there.

Because you deserve a holiday too!

Final thoughts

Travelling with a chronic illness can require more preparation than travelling without one, but that doesn’t mean it isn’t possible.

The key is knowing your own body, planning for your individual needs and not being afraid to ask for help.

Your holiday might look slower, more carefully planned or slightly different from the Instagram version — and that’s absolutely fine.

The goal isn’t to travel perfectly.

The goal is to travel in a way that works for you.

I would love to hear if you have nay more travel tips you can share – add them in the comments below!