Since starting this travel blog a few years back I’ve talked about the amazing experiences I’ve had, such as visiting the Philippines, exploring the real Cuba and experiencing Maori culture up close. But one thing I’ve never talked about – until now – is what it’s like to travel with an invisible illness.

The majority of you who enjoy reading Ladies what travel probably didn’t have a clue that I have health issues, mainly because I’ve never been a fan of openly talking about my condition. But the more I’ve travelled I’ve learnt the importance of sharing this information with my fellow travellers and am slowly discovering that it doesn’t have to be my secret burden.

So hi, I’m Keri and I have an invisible illness! For almost half my life I’ve been living with post-thrombotic syndrome and APS – an autoimmune disease that gives me ‘sticky blood’. At the grand old age of 22 I ended up hospitalised with a pretty impressive blood clot that blocked my body’s main vein and also left extensive clotting down both my legs. Unfortunately I wasn’t fully diagnosed until a month after I began to have symptoms and so irreconcilable damage was done to my body.

Bloodclot scan
Not the best image, but this gives an idea of the scale of my blood clot…

Recovering from a life-changing event

It took several weeks before I was even able to put weight on my legs again, and I then spent the following years pushing myself to discover my new limits. At the start the best I could muster was a few steps, but being a stubborn cow (and having a wonderful family and group of friends) I pushed myself to walk across the room, down the garden, to the end of the road etc – you get the gist.

Living with post-thrombotic syndrome

My body will never recover from the trauma of my blood clot fully, and this is called post-thrombotic syndrome. However, to look at me now I appear fine. I no longer use a wheelchair, and try when possible not to rely on my walking stick, but even though I might appear to be pottering along the street like any normal person, my legs are actually sore and painful, often swollen and I’ll have a raging backache. I also suffer from fatigue which means I have to choose when and what I do very carefully and heat aggravates my condition, so whenever I’m somewhere hot and sunny my symptoms always flare up.

Now I’m not after a pity party, I’m just trying to give you an idea of what’s going on beyond my façade of normality. I’ve always been quite embarrassed of my condition and my limitations, and also worried I’m a burden to my fellow travellers so often keep schtum and try to keep up. Bad move Keri. This would leave me extra sore, frustrated, or coming up with stupid excuses to explain why I couldn’t take part in activities and days out. But – and it may have taken me 16 years to get to this point – I’m finally learning that the reality is that it’s me that makes my condition a big deal, and my friends and fellow travellers really don’t have a problem with taking extra rest stops or planning trips around what I can and can’t do. All I ever needed was to be upfront with them!

Determined to see the world

Back when I first had the clot I remember doctors telling me that it might not be safe to fly again, and the idea that I might never get to see the world left me in tears. I’d always loved travelling, but being told I might not be able to do this anymore made me even more determined to see the world.

The first flight I took post-clot was a 2-hour trip to Barcelona, and I was scared shitless. Taking on board all the tips I’d discovered about healthy air travel I got through the trip fine and started slowly stepping up the lengths of my flights; 5 hours to NYC, then 8 to Florida. Next was a leap to 11 hours for my first trip to Asia and then, for the 10th anniversary of my clot I visited New Zealand – a goal me and my mum had set ourselves one day when I was lying on that hospital bed.

Wheelchair selfie in Florida!
Wheelchair selfie in Florida!

Travelling with an invisible illness

Travelling with an invisible illness isn’t always easy, but with research and planning I’ve learnt (almost) anything is possible.

Firstly I need to check my destinations. Hills and stairs are the hardest things for me to deal with and so we have to try and make sure we pick somewhere to stay where A – it’s pretty flat, B – the hotel is not on a hill or C – the public transport is good, or taxis are cheap.

The hell of booking flights when you have a medical condition

The flights themselves are the things I dread most, but I remind myself they’re a means to an end. Flying can get pretty painful as the air pressure makes my legs swell and get very sore, and I often get a lot of bruising, but its something I can deal with if it allows me to travel!

These days I can cope with short flights ok, but for long-haul flights I have to request a bulkhead aisle seat, as the most important thing is to raise my legs and be able to move about. This helps the blood flow and eases the pain and swelling.

These seats have been a nightmare to book over the years, and I still am sick to the pit of my stomach that I won’t get the seat until I’ve checked in and got onto the plane. I’ve been in tears at LAX because one airline refused to move me from the centre of a row on a night time flight (I also have to get up every hour and walk around, so I ended up with a lot of irate passengers being woken so I could move), I’ve ended up awkwardly trying to raise my legs over three seats with fitted arms while Justin curled up on the floor infront of me trying to sleep and I’ve been shouted at by air stewardesses when, having been refused a bulkhead seat, I tried to raise my legs against a wall at the back of the plane!

Finding suitable accommodation

Another aspect of travelling with my condition is picking a suitable hotel. A bath or pool helps ease my legs after a busy day, so that goes on the checklist, then we have to make sure it’s got the comforts and amenities to keep us occupied and happy on my rest days (our trips always involve one day out and about followed by a rest day at the hotel to let my legs recover), check it has lifts and book a room that’s near to the restaurant/entrance/bar etc so I don’t exert myself unnecessarily when getting around the hotel.

Planning is key!

Once the travel and accommodation is sorted, Justin and I (he’s an absolute star and always does a lot of the research on our travels) start looking into what there is to see. Once we know what we’d like to do we start working out what’s possible and scheduling out a plan.

For example, for city breaks we work out where all the things we want to see are and make sure we break down our plans to specific areas so travelling is kept to a minimum.

Wherever we’re going we always find out how far apart attractions are, how easy they are to get to, how much walking is involved in the activity and if there are places I can sit and rest etc. We’re also clued up on where all the nice cafes are before we arrive, as we use theses as stop off points for me to rest whenever we’re having to walk anywhere, as the longer I’m on my feet the more sore I get.

All this planning takes time, but I can tell you it’s worth it when it allows me to experience all the amazing things I have.

Taking a pit stop in Havana.
Taking a pit stop in Havana.

Travel goals and pushing my limits

In the early days I wondered if I’d ever make it to New Zealand, but I did. I found a way to go up Mount Fuji (I discovered there was a bus up to base camp, I couldn’t go any further, but I can still say I stood on the mountain!), I’ve been able to try snorkelling, and I’ve even attempted to climb a pyramid. To be fair that was the worst idea ever as it left me bed-bound for two days and we had to get an early flight home, but hey, lesson learnt.

And still to this day I’m giving myself new travel goals. Although the altitude will play a toll on my body doctors have told me I should be able to safely visit Machu Pichhu, and having discovered that there are ‘hikes’ to visit Rwandan Gorillas that 70 year olds are capable of I’m determined to do that myself!

There are still days now when I feel sorry for myself and focus on the things I’m no longer able to do, but then I remember what I’ve managed to achieve even with my condition. My travels may involve more thought and planning than the average Joe’s but I won’t ever let my condition stop me from seeing the world!

 

Do you have any travel challenges of your own to deal with? Perhaps you yourself live with a chronic illness? I’d love to hear your thoughts on this post – please share them in the comments below!

Travelling with an invisible illness

24 thoughts on “Travelling with an invisible illness

  1. Good on you, I like to whine about even minor travel annoyance I guess because it lets me blow off steam, since most of the world does not have a traveler with invisible illnesses or regular ones in mind. ie Kyoto train station…nowhere to sit.

    1. I’m oh so British – whining inside but rarely let it all out! 😉

      Is there seriously no seats at all in Kyoto station? That’s pretty shocking!

  2. Ok so I haven’t even met you and yet I am so immensely proud of you!! You are such an inspiration to people who have conditions like this by proving that not only did you get up and about to do walks and hikes again but you also found a way to travel to the other end of the world (which I can’t even bring myself to do without achy legs!) and I can’t even begin to imagine how much patients, courage, motivation that must have taken. But you’ve proven that big dreams can come true despite adversity and against the odds and massive applause to you for that Keri.

    1. Thank you Shikha, that’s really kind of you! I’m far from perfect – I still have days when I feel sorry for myself, I’m known to get quite grumpy when I’m sore and I’m still quite bad at managing myself (totally overdid it in Budapest and paying for it now, but still loved my time there!) but my stubborn side won’t let me be beaten!

      Travelling with this stupid condition can make things frustrating at times as there’s still so much I can’t do, but then I remind myself how lucky I am that I have an opportunity to do the things I can. My life will never be ‘normal’ but I hope this post shows people that having an invisible illness does not need to stop you enjoying life! x

  3. It never ceases to amaze me how much travelling you’ve done after being told it might not be possible. Way to prove the doctors wrong! I’m certain that your story will inspire readers find a way to make travel work for them, whatever health issues they have.

    You’ve been to Lisbon haven’t you? How did you get on there with all the hills, or did you stick to the flatter areas? I know I struggled a bit and spent half the time on a city tour bus, got to see a lot that way though! :-p

    1. Thanks Ania! x

      Yep did Lisbon, but if I’m honest I really did struggle there. I knew there’d be hills but wasn’t prepared for how many, how steep they were and how hard to it was to get from A to B without avoiding them. I think that put a bit of a downer on my trip there and I wasn’t too enamoured of the city for this reason. Maybe I have to accept that I have to pay out for a lot more taxis if I want to visit places like this! 😉

  4. I’m so sorry you struggle with this condition (and that so many flight attendants have been so nasty to you!) but I think it’s amazing how much you still push yourself to travel and do things that are difficult. I have ulcerative colitis, which is a digestive disease that affects my colon. So yeah, not so much fun. I have an ever-growing list of foods that bother my system, which makes trying new foods in other countries frustrating sometimes. I also worry constantly that my condition will get worse and I won’t be able to travel. I was hospitalized last summer for 2 weeks because I got so sick, and I had to cancel a trip we had scheduled for that time. I don’t necessarily have to adjust my activities the way you do, but dealing with food issues and bathroom issues while traveling can get really difficult. And my friends don’t always understand what I deal with (though they do more now that I’ve been in the hospital for this a few times) which means they’ve occasionally said things to me like “can’t you just take an Immodium?” (uh, no, not good for me, and if I’m actually sick, it’s as helpful as spitting on a fire). Anyway, keep doing what you’re doing! I’m sure by writing about this, you’ll inspire people who think they can’t get out there and travel, or whatever it is they think they can’t do because of their condition.

    1. Hi Ali, thanks so much for your kind words. I feel for you – I’ve been diagnosed with IBS and am currently trying the Low Fodmap diet to learn my triggers so now I worry a lot more about food and bathrooms when travelling. It’s so frustrating!

      I know its not easy for you but I hope you won’t let this horrible illness stop you from travelling. Wishing you all the best! K x

  5. This is such a fantastic post Keri, I’m so, happy you’ve managed to travel to so many amazing places despite being told you might never fly again. You are an inspiration to any traveller, not just those who have an illness. See you next month! x

    1. Thanks hun! It’s not easy, but as you well know, I’m a stubborn cow! 😉

      See you soon, K x

  6. You have led an exciting life, despite the constraints put on you by your illness. Congratulations !!
    I traveled out of the United States for the first time in my life( I’m 59) last month. It was scarey, but empowering at the same time .
    Can’t imagine how hard it can be for you, but you have a reason to be very proud !
    I hope you continue to enjoy your life and travels! You have a GREAT attitude !!

    1. Thanks Di and a huge well done to you for your big trip, it must have been pretty darn scary, so good on you! Not had a chance to speak to you for a while but hope you enjoyed your time there with your family. Would you go again now you’ve made that leap?

      As for my attitude, well I do have my moments of tears and feeling sorry for myself, but then I remember that I’m actually very lucky to do the things I do, and so kick myself up the butt and book another trip! 😉

  7. great article Keri – if you ever need people to carry your bags you know where we are…and you don’t need an invisible illness to appreciate a sit down or a day-off!

  8. Just stumbled upon this and it’s a great post. Well done for having the desire and spirit to move outside of your illness. I can totally identify because I too have APS, along with two other wretched autoimmune diseases. I have also travelled a lot but since my husband died, mostly alone because I can’t be bothered to keep making excuses to people who obviously can’t (or won’t) understand. Travelling alone gives me the freedom to do as much as I can, when I can, without feeling that I’m spoiling someone else’s trip. I totally agree with doing a lot of planning beforehand. I spend HOURS on it and by the time I get where I’m going, I even know if there’s a lift at the subway station! Looking forward to hearing about more of your adventures.

    1. Hi Ann,

      Thank you so much. I’ve been told with APS you often get other autoimmune diseases, not looking forward to that! 🙁

      Well done for being brave enough to travel solo, I have to say I personally, am not! I like to have the security of having someone with me, but I wish I could be that brave. Oh, and I totally get where you’re coming from re lifts in stations, that’s another of our tricks too!

  9. Hello there
    It’s amazing what we can do and what can be done if we want to make it happen
    Without going into lots of detail. I also have sticky blood. And found this out after a,thrombotic event whilst flying to Corfu from Athens. 18 years ago
    Due to Many allergies including anti co agulants I was doomed not to fly. 15 years. A simple trip to my sisters wedding in England took 3/1/2 days. Train boat etc rather than 31/2 hours
    I couldn’t visit my son in uni and had resigned myself to being a prisoner here in Greece
    Luckily. I found a new haemotologist. Who was willing to trial me with a new anti coagulant. And hey bingo. I was ok. And flew to England for the first Tim least year and will again soon
    Having flew throughout my childhood and also worked on a cruise ship traveling half the world. I appreciate your zest for travel. It’s like nothing else.
    Recently I’ve found I have relatives in New Zealand. I wonder if I’ll manage to go
    I know what you mean about aisle seats. Same problem. Must be able to walk around. Not easy climbing over other people
    Wishing you luck on your travels. Keep in touch
    CK

    1. Wow CK, sounds like you had a really tough time of it, must have been an absolute nightmare to be allergic to the anticoags! Glad to hear you’ve found something that works, hopefully you’ll be able to get back out there now and see the world again – much more easily! x

Leave a Reply

Your email address will not be published. Required fields are marked *