The challenges of travel with a disability/medical condition

I have a medical condition that is not widely known about even amongst some of my closest friends. I keep it well hidden, not so much out of shame or embarrassment as simply because it’s not an important part of my identity. However, I’ve decided to speak about it today to form an entry about what it can mean to travel with a disability.

I have a condition that falls under the umbrella term ‘neurogenic bladder’. What it means in my case is that the nerves controlling the opening of my bladder don’t work. As a result, I can’t urinate without using a catheter, a procedure I perform an average of 4 times a day.

What are the challenges of travelling with a disability?

There are a number of challenges to travel in my circumstances, although there are no problems that can’t be overcome. All too often it is easy for people to be put off travelling when there are difficulties, but I have found that there is no reason for me to stay at home just because things are not always straightforward.

The first hurdle is the strain placed on my baggage allowance. I require an average of 30 catheters per week (they handily come 30 to a box, which makes for easy counting!) and I need an extra box for every four weeks I’m away, just in case I get an infection that requires me to catheterise more often or if something goes wrong and I don’t make my flight home on time. The catheters are difficult to get hold of out of the country. I would need to see a doctor and, even then, I’d be unlikely to get a brand I’m familiar with and, trust me, it makes a difference. Also, they’re ridiculously expensive. The brand I use cost around £1.80 EACH.

So, for this trip (32 days), I’ve packed 150 catheters. And that’s not the end of it. As well as catheters, I require items to keep catheterisation as clean as possible to reduce infection risk. This means hygiene wipes and plenty of alcohol hand gel. For a month, I carry three packs of wipes and two bottles of gel. Then there’s the mini bottle of gel needed for the flight since I can’t carry more than 100ml in hand luggage.

What does that look like? It looks like this:

A month's ISC supplies for travelling with a disability

So, is that the end of it? Is that all the additional gear I need to pack? Actually, no. You see, catheterising several times a day puts me at massive risk of urinary tract infections that, if I don’t catch them in time, can progress to pretty serious kidney infections. So I have to travel prepared. That means carrying everything I need to diagnose and treat an infection. I need urine testing strips to detect the infection, and sterile pots to collect samples for testing. Then I may need to treat. That involves antibiotics and I like to carry enough to cover a 3 day course every two weeks of travel. In addition to antibiotics, I need painkillers and an alkalising agent. It’s at that point that it gets really interesting! This is my alkalising agent:

Trisodium Citrate - required when I'm travelling with a disabilityAt the airport

See the issue? What do you think happens when you carry twelve bags of unlabelled white powder through the security of an international airport? A closer inspection is almost guaranteed and explaining can be fun. It’s actually trisodium citrate, commonly found in processed foods. Thankfully, when you take a closer look, it is very obviously not a controlled substance. At least, if it was then I’d have been totally ripped off by my dealer because the crystals are relatively huge. It would make for extremely poor quality cocaine or heroin!! It’s still an idea to carry a spare bag though so that security can test some without eating into my supply. I have found the officers to be generally friendly enough though and a smile and a sense of humour make the process pretty painless.

On the aeroplane

Okay, so I’m on the flight. Ladies, if you’ve ever tackled tampons in an airplane toilet you’ll have a small understanding of the problem. Catheterising is actually quite a similar process except that you need a little more room to manoeuvre, something that’s not exactly in abundance on an aircraft! I’ve learnt to be something of a contortionist. Also, catheterising immediately before boarding can sometimes mean I can avoid the issue altogether, although it does mess with my ‘timetable’ somewhat and isn’t advisable to do regularly.

What are the additional challenges in Kibera?

So, I’ve made it to my destination with supplies intact. For obvious reasons, I’m going to focus now on the particular challenges I face living in the Kibera slum of Kenya.

Firstly, there’s the simple fact that hygiene and sanitation are not great. There’s no flush toilet, no running water for hand washing and, to be honest, I tend to acquire a layer of dust and dirt that no bucket shower ever seems to shift! It makes a clean catheterisation practically impossible. I do what I can with alcohol gel and hygiene wipes but the standards don’t come close to what I can achieve at home in England. Obviously, this significantly increases my infection risk – the reason I prepare for an infection every fortnight whilst travelling. Next, the toilet itself. Squat toilets…seriously?! It’s next to impossible. Try squatting whilst doing something fiddly with both hands. If you can keep your balance then you’re doing a better job than I can usually manage! I’ve been forced to learn some very peculiar techniques that are certainly not taught when you’re trained to catheterise. Then comes the problem of disposal. There’s no handy kerbside rubbish collection, and you can’t burn plastic catheters on the fire. In fact, for a relatively short trip, it’s often easier to bag up the used catheters and carry them back to the UK for disposal. I’ve never actually had a search of my checked luggage on a return journey but I suspect it will happen one day. I do wonder what they’d make of a suitcase full of used catheters!

Can you travel with a disability or medical condition?

Anyway, the point of writing this isn’t so much to list the challenges as to point out that I do it. Yes, it can be a bit of a nuisance, but the problems are certainly not insurmountable. There’s no way I’d let it stop me doing what I love. There are so many people with disabilities and medical conditions who are put off travelling by the thought of the extra effort involved. However, I’ve found that it doesn’t need to be a big issue. Yes, it’s going to be more of a challenge for you than for somebody who doesn’t have the condition, but it shouldn’t stop you. The key is not to be negative about it. Don’t think about how hard it is and get downhearted before you even begin. I’ve always found writing lists helpful. Down one side of a piece of paper I write all the potential challenges and all the things that might go wrong. Then down the other side I write the solutions. It can cover everything from losing your medication to needing to explain a problem in a foreign language. If you’ve thought about how to tackle the issues in advance, then you’re not going to be stressed if things do go wrong: you’ve got a plan. You’re then free to enjoy the experience of travelling.

I guess the conclusion is simply that the vast majority of challenges, medical or otherwise, are only a barrier to travel if you let them be. It can involve a little creative thinking and, of course, I realise some conditions are a lot more difficult to work with than my own. However, I don’t believe you should abandon all hope of exploring our amazing world just because life has thrown you a few challenges.

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11 comments

  1. Hey Sarah, damn. You just schooled the travelblog world. Would you be interested in possibly me reposting this (or figuring something else out) on my blog? It really aligns with what I’m trying to do/say/put out there. thestrangeandnew.com, if you’re curious. Let me know!

    1. Wow! Thanks for the compliment. I’m a real amateur compared to most bloggers so your comment has nearly made me cry! (I’m just way too emotional!). I’m happy with a version of reposting. Please don’t completely repost as duplicate content is a Google black mark. However, feel free to quote a small part (or reword a part) provided you give credit and a link. Contact me at wanderlustvitam@gmail.com if you want to discuss further.

  2. There should be more article like yours, Sarah. I often forget how much traveling can be difficult for people with medical conditions – big or smal. But as you say, the most important is to stay positive, even when you look like a big-ass drug smuggler haha.

    Don’t forget to reach out when needed. There are plenty of people ready to help out here too 🙂

  3. Thanks for writing about such a personal topic! I live in East Africa and it’s not the easiest place to travel, let alone with a disability, so bravo! Keep on enjoying your travels!

  4. That’s so awesome that you have not let this stop you from travelling! And especially so, seeing as you travel to places with little infrastructure and with greater challenges than if you simply travelled to another developed country.

    I personally have epilepsy and although it doesn’t stop me from doing anything I too have to take a load of medication and be really careful wherever I go. There definitely are some health conditions where people just won’t be able to travel like we do, however there are many conditions where challenges can be easily overcome.

    1. All credit for travelling with epilepsy. I’m guessing the jet lag is definitely not your friend?! And working out the timings for the medications when you’ve travelled through half a dozen time zones in the past couple of days!

  5. Oh my! You are a great example of the “when life gives you lemons, make a lemonade” saying 🙂 I applaud your matter-of-factly way of talking about your condition. I can imagine how traveling around with so many extra items is hard – especially the bags of white powder! I have atopic eczema that was not doing great for the past two years and I´ve gotten used to carrying tons of creams everywhere (as you say, sometimes stuff that is really basic back home is hard to get elsewhere…) in fear of running out of them – I´m usually vary of trying out new creams as most of them make it worse and obviously hygiene is a great issue too. Btw., the issue about peeing in a plane…I find it uncomfortable even with a healthy bladder.
    Cheers to you for making all of your travels happen!

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