Please ensure Javascript is enabled for purposes of website accessibility
 
  • aticcersguidetolife

Additional Costs as a chronically ill person part one

THIS POST HAS KINDLY BEEN WRITTEN BY A FRIEND OF MINE CALLED MEGAN. MEG AND I MET AFTER SHE JOINED MY ‘A LITTLE POORLY GROUP’ IN BRIGHTON.’ RECENTLY I ASKED MEG IF SHE WOULD LIKE TO WRITE THIS POST AFTER SHE SHARED THIS STORY WITH ME AND I WAS SHOCKED AT JUST HOW MUCH HER TRAVEL INSURANCE COST! MINE HAS ALWAYS BEEN MORE THAN MY ABLE-BODIED FRIENDS BUT I THOUGHT THIS WAS OUTRAGEOUS!!


Travel Insurance - Another hidden cost when you’re chronically ill or disabled.

So the world is starting to go back to normal, borders are opening, and there’s one thing on the mind: a holiday.




I became chronically ill at 14, and in between the hospital appointments, inpatient care and flare episodes, I had the luxury of going on many holidays. First with my family, then friends and even travelling to meet friends by myself. There are hundreds of stories I can tell about collapsing on airplanes due to pressure, or being wheeled around galleries, even the experience of using my walking stick in public as a young woman. Stories that show how being chronically ill or disabled isn’t easy, and often requires a lot more planning than the average healthy, able bodied traveller would need.

I’ve become an expert at googling accessibility options. I can find the scarce information on whether there are wheelchairs I can use. I can tell you where every bathroom is in the vicinity. I always travel with my version of a first aid. I know how to contact airports for assistance. I have taught my friends and family how to take care of me in the various different types of episodes I can experience. But one thing I cannot control is the cost of being chronically ill and disabled.

When I travel I of course buy insurance to make sure that if something were to happen I am protected. For most this is in case of a slip and a twisted ankle, or in case of something scary and unexpected it’s a safety net, and costs very little in comparison to the rest of the holiday.

In 2018, I travelled to the south of France and spent a week with a friend, enjoying the sun and sitting around a pool. For this trip, I paid around £12 for travel insurance. On the insurance, I confirmed my conditions and that I have a shunt which had never had a revision. In January 2020, I had the amazing experience of travelling to Japan. It was 21 days and all of my savings and absolutely worth it. I paid £45 for travel insurance with the same information.

Two months ago, I had my first ever revision of my shunt. It has been 8 years since my shunt was inserted, which, if you ask anyone who has had one, is a very good amount of time. Shunts are notorious for needing revision. They’re far too fussy and always overcomplicating things.


Two weeks ago, I booked a last minute trip to the US to go and see a friend I haven’t seen in 3 years - since he migrated there. He has a wife and an 11 month old I’ve never physically met and am desperate to cuddle and squish. We’ve had to cancel 2 other trips to see them due to the pandemic, which is old news now. Everyone knows someone who’s had to cancel their plans. And everyone knows someone who is now rebooking or has gone on a holiday, finally been able to hug the friend they haven’t seen, or cuddle the family they haven’t touched in more than a year.

I booked the flights in a very last minute, sudden decision with my best friend. We sorted out the pre-flight tests, the post-trip tests, getting to the airport, our visas. We contacted the airport for accessibility, talked about how to handle my conditions on the flight. She booked her travel insurance and complained about how expensive it was at £35 and I laughed, thinking how mine would be a bit more as it always is because of my conditions. I went to my previous provider and dutifully entered in my information, this time selecting ‘yes’ to having a shunt revision.




To my surprise; ‘unfortunately we cannot find any policies’.

I was aware already that I couldn’t go with just any provider, a lot of travel insurance companies won’t provide policies for people with pre-existing conditions. But I’d specifically gone with a company that accepted pre-existing conditions, so I was surprised when I had no policy options this time. I went to google, trusting in the overlord of information to provide an answer: ‘Travel insurance for pre-existing conditions’. One click later, a quick fill in the questionnaire and only one option was offered. The price for single policy cover? £369.00

When I say I choked on air, I mean it. Surprised, I went to a different option from the google search. This time I was offered 3 polices, the cheapest was £450.00. I wasn’t offered an Annual policy cover.

I decided to have look and see what the problem was, and changed the information to see what was so costly; the condition itself, or the device that keeps me alive. From this I found the following, unscientific breakdown of one policy provider website:

Destination: Europe, single policy cover (I chose Spain for this but most are same/similar pricing)

IIH - no shunt - 53.00

IIH - shunt, no revision - 136.00

IIH - shunt, 1 revision - 159.00

IIH - shunt, 1 revision, in current treatment - 383.00

Annual policy? Not an option.

Destination: US, single policy cover

IIH - no shunt - 59.00

IIH - shunt, no revision - 339.00

IIH - shunt, 1 revision - 415.00

IIH - shunt,1 revision, in current treatment - no policy available.

Annual policy? Not an option.

The numbers speak for themselves really, but I’ll add my own comment: how dare I travel whilst being chronically ill.

Bearing in mind, the above costs are for a basic policy, nothing fancy, the minimum amount of protection where the worst to happen. Even if I just sprained my ankle.

I expected the cost of travel insurance to be higher than before because I was going to the US, the land of ableism and horrific medical care. I expected the cost to be higher because of my shunt. But I didn’t expect the fact that I have a device that keeps me alive and is doing a really good job of that, to be the reason my insurance when up more than 600%. I didn’t expect the travel insurance to be half the price of my flights.

Luckily, I have some savings in place which means I can afford to travel, I can afford to protect myself. I will be going on holiday, and will be cuddling the hell out of my friends. I will struggle on the flight, and I will have issues which I always have from travelling. I am privileged because I can currently afford the cost my existence results in, not everyone is so lucky. To quote myself after I paid out for the travel insurance ‘Well clearly I’m not leaving the country again’.

To exist as a disabled, chronically ill individual is to understand that I am taxed for existing outside of the norm. I cost more than my friends, than my family. I am an expense purely because of the way my body works. Next time, I’ll make sure to check the travel insurance policy first.




Recent Posts

See All

I need a rant

If this isn’t your sort of thing please feel free to skip by! There’s some fun coming soon! So I had a social worker or ‘independent living advisor’ from the council come round to me today. She left m