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Flying with an Invisible Disability

I’m Hannah, 24 years old from chilly North West England. I recently graduated university after studying English Language and I now fill my time working in the NHS, exploring new places, listening to music (especially if it’s live) and blogging about all my adventures

Travelling with chronic health issues is probably a stress for most people. But a lot of my friends with disabilities not only manage this, but also nail it. I first started tube feeding in 2011 and before then I hadn’t been abroad since 2006. In summer 2014 I flew to Limoges in France. It was the first time I’d been abroad whilst needing large quantities of medical supplies everywhere I went. Fortunately, some of our party were driving, so they took everything over in the car. It was a worry because I knew it would be hot and I was worried about my feed going off. Fortunately the feed survived and there were no problems getting it over. The flights there and back were a little more traumatic as I suffered severe dizziness and a couple of fainting spells which made me anxious about flying again. I spoke to my consultant who suggested that I needed to keep fluids running through my tube on flights because the atmosphere was dehydrating and flying can cause a drop in blood pressure.

In February 2016 I flew the short flight from Liverpool to Belfast and my feed supplier arranged to deliver it to where I was staying – at a friend’s house. This involved filling in some forms and it was all fairly straight forward. I was cleared to fly without fluids for this flight because it was only 25minutes long and we were only flying at 11,000ft.

After that, I planned a holiday to Turkey. This was much more complicated because I was going to have to take the feed over myself. Customs laws are much stricter in Turkey and so my feed supplier (Abbott Nutrition) was unable to deliver it to where I was staying. It was completely overwhelming to begin with and I didn’t know where to start. I asked a couple of friends who I knew had flown with medical supplies and they gave me a few pointers. We contacted our airline, Monarch, and they were hugely helpful which helped me to relax. They told me that if I brought along a doctors letter then they would allow me to fly with all that I needed to bring with me, with no extra charge. My medical supplies filled really large, solid suitcase and weighed in at 18kg. I was so grateful there was no charge. I had to pay £15 for a doctor’s letter but it was still much less than I would have had to pay if I had to pay for the case.

I also had to find out whether my feed would be ok in the baggage hold with the temperatures potentially dropping below freezing. On top of that I was worried that the plastic bottles might not survive the pressure. Fortunately, everything survived.

I carry the feed that I am connected to in a backpack so the next task was taking 1500mls of fluids through security and remaining attached to it. I’ve had a few problems at gigs and concerts having my bag searched so I was perhaps most concerned about this part. Again, I was armed with a letter from my consultant. Surprisingly, airport security dealt with it much better than most arena bag searches I’d been through. They took me to one side and allowed me to show them everything that was in my bag. This is the way it should always be done though it very rarely is. I don’t like people touching my equipment in case it breaks or my tube gets pulled out.

All in all I found it a very positive experience and feel confident about travelling again. It felt like quite a lot to sort out at the time so I know I’ll need to start preparing well in advance for my next journey. Monarch said that they would keep my details on file for when I fly with them again, and I’d definitely choose to fly with them again.

It can be difficult when you have an invisible disability because there aren’t usually any protocols in place for your specific needs. Often, these protocols have to be made up when you come along – you’re the pilot study and any pilot studies always need tweaking. As with any disability, I am constantly learning.

I had a wonderful time in Turkey – a much needed holiday in the sun just days after finishing three long years at uni. I went on a boat trip, went scuba diving and spent lots of time at the beach. My advice to anyone else travelling with medical equipment is to start planning early, do plenty of research and communicate with everyone who will be involved in your travel and stay. Don’t wing it, have a solid plan in place and ensure you travel and stay with someone you trust. Most importantly though - have fun and make some memories! That’s what travelling is all about.