I’ve mentioned it before but travelling and chronic illness aren’t quite a perfect match. Preparing to go away with a chronic illness can be a lot, so I wanted to share some things I have learnt over the years. These are simply things I and other chronic illness pals have found helpful and/or useful. Of course everyone is different and so I highly recommend you honour yourself, your needs and do what you feel is right for you.
Things I’ve learnt and things to bring
I wanted to share a few things I’ve learnt over the years:
- Be involved in planning
- Plan ahead and set aside time for rest breaks
- Set expectations and boundaries
- You most likely won’t always need to enforce these but it does take some pressure off
- Remember: it’s usually easier once you’re there and in the moment
- The mental load of making decisions, packing, worrying about energy levels/symptoms and getting meds in order is harder than actually being away (trust me)
- Bring your own food/snacks if you can or order it for click and collect when you arrive
- I’m extra and bring my own pillow because sleep is key and it’s worth the extra effort
- Go travelling with people who understand you
- Try travel during off-seasons or avoid school holidays – of course we can’t always avoid this, but travelling in less busy times can make things a little easier
- Last trip I wish I brought a heat pack with me but they’re heavy so if you can’t fit it – look at getting some instant/stick on heat packs or heat creams like voltaren/metsal
- Don’t forget to bring some comfy outfits too (light layers are a great way to go) as well as water bottles and electrolyte drinks
- Have a list of your medications so you don’t forget anything! But also a doctors note explaining/listing medications can really help If you need to prove anything or need a new script.
- Pack your meds in your carry-on bags – just incase your luggage gets lost!
- If you’re concerned about committing to travel dates shop around online! Different websites like Booking.com and Expedia can have different deals and cancellation policies. Also, don’t be afraid to ask for late check out or early check in!
- Wear a Sunflower Lanyard – wearing the lanyard is often encouraged on transport and in airports, as it is a way for you to indicate to staff that you may need a little extra help, guidance or time.
- The Sunflower is a globally recognised symbol for non-visible disabilities, also known as hidden disabilities or invisible disabilities — this is more common in the UK, I haven’t seen it used in Australia but hopefully with more awareness we can get more recognition!
Unpredictability and dealing with thoughts like “but I don’t know how I will feel then”
I’m sure anyone with a chronic condition understands that planning ahead is difficult, you can book a holiday months in advance but with chronic illness we sometimes don’t know how we’ll be feeling minute to minute.
So holidays are truly just a gamble. There’s no real way around that. You do have to make the decision that’s right for you and honour it BUT in saying this making the decision about whether to travel or not is HARD.
Many times I’ve almost cancelled because I’ve honestly not been feeling well enough but many times I often still go because I don’t want to lose the money or let others down. On my most recent holiday, I was in hospital a few weeks prior talking about surgery – so should I have gone?!? Maybe not. Who knows but I’m glad I did.
The truth is that moosstt of the time I go I don’t regret it (and if I do, it’s only a little) because I have prepared myself and managed my expectations over the years … sometimes I feel there’s no point waiting until the day I feel I can do this, it may never come. Sometimes you need to take a leap of faith and just manage while you’re there – you know yourself and what you need, you can do this.
But also remember the tip from before: if you’re concerned about committing to travel dates shop around online! Different websites like Booking.com and Expedia can have different deals and cancellation policies. Also, don’t be afraid to ask for late check out or early check in!
A few extra key tips
A few other things to keep in mind when making travel plans – if you have a chronic illness, travelling in your own country can be a great idea because it’s your own health system and you have access there. I have forgotten medications in the past and I can easily go to a doctor or get a prescription faxed over.
Remember just being away is enough
If get to your destination and are struggling a lot, remember you don’t have to do anything. Sometimes just a different place to hang out is all the change we need. Don’t underestimate the power of a change of scenery and remember self-compassion in these moments — try not to beat yourself up, you took the leap and that’s worth celebrating.
Remember to look up accessible day trips or activities. Try lookouts instead of hikes, cafes/restaurants with views (so you can get the best of both crossed off your list) or local hideaways.
It helps to do a little research before you go so once you’re there, if you’re unwell you’re not overwhelmed trying to managing health and things to do.