Our ability to travel has changed several times over the last few thousand years.
Once we walked everywhere, then domesticated animals carried us, then boats and carts. Eventually, we had planes, trains and automobiles (see what I did there?).
Invention has created the opportunity for more of us to see more of the world.
With all of those changes has inevitably come challenges. For the places people travel to, for the travellers doing the traveling. For the industry itself.
Having a chronic illness can complicate travel. Not only does it involve packing for an immeasurable number of “what if” situations, but there is a bit of wear and tear that happens to one’s mental health too.
And I’m sure there are seasoned travelers who think this isn’t so, but the fact is it is. Regardless of the kilometers (or miles) you’ve clocked, preparation and execution for someone with a chronic illness is decidedly different and more complicated than it is for someone without one.
Sure, with increased incidents of travel, things might get easier, you might become more accustomed to it, but the fact is your chronic illness will always be something that lingers (even silently) in the back of your mind. Or, in the case of someone with a bunch of paraphernalia required for survival, in the bottom of your suitcase or designated medical bag.
In the nearly twenty-one years that I have had Type 1 Diabetes, I have travelled. Nothing of great significance to most (though significant to me) but enough to have a variety of experiences.
Some good, some bad, some ugly.
But before I begin, let me say this: the purpose of this post is not to dissuade anyone with T1D or other chronic illness from travelling. It is to highlight the treatment of those of us with extra baggage (both the literal and the figurative) when we do.
I had travelled to Mexico a few times post-diagnosis, and post-DKA. But I cannot really say much about those travels because they were rather uneventful. And my recollection of them is almost non-existent.
Security through the airports was fine and my then nonchalant attitude towards management made my diabetes a non-issue. And by that I mean, I basically carried on like, “what diabetes? Who has diabetes?” Rarely testing my blood sugars and half-assedly taking my injections.
Looking back on it now, I see it for what it was. I was in my early twenties and silently struggling in so many ways. It was something (if not the one thing) I could control and I was going to even if it meant unknowingly risking my own life.
I can’t say much more about them as those trips took place in a time that I’ve forgotten. For those who do not know, I suffered some brain damage during my DKA. When you flatline for a good seven minutes I guess that’s to be expected. The result was very patchy memory. Mostly of the first 19 years of my life, but also the couple of years after the ordeal. Some things are there and others are not. Some things are foggy. And others feel foreign, almost like they aren’t even mine.
When I was in university I was invited by a friend to travel to the east coast of Canada along with her and her family. I was thrilled and excited to do so.
But the trip started off with some bumps. And it left some bruises.
On our way through security in Toronto, they wanted me to place my glucometer in the bin to go through the x-ray machine. I notice a change in things from previous trips and attributed that to the attacks in NYC.
I had never been asked to do this before, to relinquish my glucometer and other diabetes things. At this time my team was still advising that those x-rays could damage the machine that helps me navigate this life. And I panicked.
Anxiety took hold and I broke down.
We were travelling with my friend’s parents. Seeing my panic her mother immediately stepped in, giving the security agents what for. It helped that she had a nursing background and was able to throw medical knowledge at them too.
In the end, the glucometer went through the machine. Nothing terrible happened to it.
My mental state, however, took a massive hit. And right before we were set to take to the skies. But otherwise, it was an uneventful experience.
A few years ago we visited my folks in Florida. I was still testing with a glucometer and managing my T1D with MDI. We ventured over the border and flew out of New York.
There were absolutely no issues with airport security.
Last year we surprised our son with a trip to Disney World for his birthday. He and I were already set to travel to Florida to visit my folks, but we thought it was a great opportunity to reallocate some funds and do a side trip to the House of Mouse.
I was a bit apprehensive about it all. My husband would not be coming with us and, in addition to flying solo with the kiddo, I would be renting a car and driving four hours north to all things Disney a few days in to our time with my parents.
And this Florida trip looked a bit different than our last one.
At least, for me. Instead of pricking my fingers constantly (but I still did now and then), I now had a flash glucose monitor (Libre). A wee little circle on my arm that read my blood glucose (well, my interstitial fluid). Also, I was no longer on MDI. I had successfully transitioned to an insulin pump a few months earlier.
It was quite something for me. I was able to swim in the pool with my kiddo. With no interruption in my management. My tubeless pump meant no anxiety regarding insulin administration. No fear or worry that I might forget to reconnect. It was me the entire time. Delivering what I needed to survive. AND, it offered the ability to tinker with my basal rates, something that helped greatly in that warmer climate.
We had a wonderful few days and were preparing to head north to Disney. The night before we departed I was set to change my sensor. Lasting two weeks each, I naturally brought two. We only had 6 days left in our trip, but I wanted a back up. Just in case.
I did everything I normally do. But the damn thing misfired. The sensor was in the applicator and I had the giant needle sticking out of my arm. FUCK. I gathered my strength and pulled that sucker out. I was so grateful to have that second back up sensor.
Except that one didn’t work either.
I did everything I normally do. But the damn thing was faulty. There was no adhesive on it. And as fast as it went on, it slipped off. FUCK. I was stood there staring down at the little white circle resting peacefully on the floor. Fuck, fuck, fuckity fuck!
Now things were complicated. I didn’t have anymore sensors. My father immediately took off to the nearest pharmacy to procure one. But he left before I could explain that he would not be able to purchase one over-the-counter in here Florida like we could back in Canada.
I called my travel insurance company and found out I would be covered for the cost of a doctor’s appointment to get the necessary prescription.
Dad returned. Flustered. But I was grateful for his valiant efforts.
I would be going it “old school,’ pricking my finger every couple of hours. Which isn’t that bad really. But it did take away some of the magic. For me. I was pretty pumped to be able to wander through all those parks without have to stop and test my blood sugars.
But I managed. We set a timer and stopped every two hours to check my blood sugars, and make any needed adjustments. Our Disney trip was a success. I had absolutely no issues with my diabetes (largely due to my constant finger poking and my wonderful insulin pump!).
And I had wonderful support (and understanding) from my kiddo.
And when I returned home I called and the two fucking faulty sensors were replaced.
Bracing for Barcelona
Sometimes the things we want most are the things that scare us deeply.
My previous travel experience had been limited to the continent on which I reside. And really, quite close to home, in the grand scheme of things.
So when the opportunity came for me to travel to Spain I was not only excited but also fairly terrified. However, my desire is to make some kind of positive difference in the diabetes community. And advocate for those (like me) also living with mental illness.
We were only going to be there for three days, but it still meant bringing an awful lot of “diabetes what if” crap. I brought extra everything. I had never travelled so far from home and I would be damned if I was going to be caught without something I (might) need.
The flight over was a success. There were no issues with my medical things. And my blood sugars were totally stable. We had a moment where it looked like we might miss our connecting flight (45 minutes between flights was not enough!) but we made it. So, when it came time to head home, I was fairly confident.
But things were not as smooth on the way back.
Nope. Shit went down in Schiphol.
When we landed in Amsterdam we were immediately corralled into a crudely blocked off area to undergo a security check. When it was my turn to stand in the scanner I advised the agent that I was wearing two medical devices. An insulin pump and a continuous glucose monitor. She told me that was fine. And in I stepped.
Another agent came over and uttered something. Next I was being swabbed. And patted down. Then swabbed again. And again. The original agent and this much nastier one constantly shouting things back and forth. Because I do not speak Dutch, and they never once used English, I had no clue what was being discussed.
Not only was my anxiety elevating, but I felt my sugars preparing to tank.
Next I was asked to come in to a stall and remove my shirt so the original agent could pat me down again. Much more intimately this time. When we emerged I was again swabbed. And the two female agents were still back and forwarding. Now a male agent towered over me, talking to the original agent. Again, in a language I did not understand.
I told them I had documentation from my doctor explaining what the devices were. But that information fell on deaf ears more than once during this ordeal.
And it fucking was an ordeal. By now I’m sweating. I know my blood sugars are low and that is causing me to panic. I’m worried they won’t wrap this shit up in time for me to treat my low. I’m worried we’re going to miss our connecting flight home and we don’t have the fucking money to purchase new tickets. I can feel myself about to freak the fuck out and…
They swab me again. And again, now in front of the male agent, the original agent aggressively pats me down nearly ripping my insulin pump from my arm. And then they tell me I can leave.
What in the fuck just happened? I couldn’t believe it. And my poor husband couldn’t do anything but stand by and watch. Though I could see in his eyes that he knew what I was thinking and I caught him check his phone so I knew that he was aware of where my blood sugars were…and he gathered up all our things, both suitcases, my purse, the medical bag, me. And he got use to a bench where he immediately shoved a handful of candies into my hand and told me to eat.
Reeling from it all, we hurriedly made our way through the airport. We stopped briefly to grab some wee souveniers.
Better to do it now because I am not fucking rushing back to Schiphol!
We make the plane with a few moments to spare before boarding and enjoy an uneventful flight home to Canada.
Travel Path Aftermath
The year is 2020.
And no this isn’t a fucking science fiction tale.
The year is 2020. And we have made great advancements in many technological fields. Including tremendous advancements in medical tech.
Things like insulin pumps and CGMs are intended to help those of us with diabetes. Those devices should make travelling easier. And they do.
But lack of information and education can lead to misunderstanding. And incidents like what happened to me at Schiphol. Incidents that shouldn’t happen.
Everyone has a right to feel comfortable in their body. Even if that body has robot parts attached to it in order for it to function properly. And no one should be discriminated against because of their body. Or their robot parts.
Before I even settled back in and properly decompressed from our trip to Barcelona, I filed a formal complaint with the security department at Schiphol. A process that was somewhat complicated and left me feeling as those little would be done.
That particular airport has multiple security companies working within the airport. In my complaint they wanted the name of the company and the names of all the agents. I informed them I would be unable to provide that information as I had not been anticipating such an issue so wasn’t paying close attention to detail (that’ll teach me!) and I was in medical duress. I provided, what I thought to be, fairly good physical descriptions of everyone I interacted with during the situation.
After a bit of back and forth, I received a formal apology.
And I was asked if my account could be shared. So they could use the situation as a teaching moment and prevent anyone else from having an experience like mine.
Of course I agreed. All I’ve ever wanted is to advocated for those like me. And if I had to have a hundred horrible experiences to stop just one person from experiencing the same I absolutely would.
I am hopeful things will continue to improve for those travelling with chronic illness.
And I am hopeful that I will travel again.