Not Quite So Brave: Living with Diabetes in Three Countries

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“You have diabetes and you went to all those different countries?” the woman exclaimed. “That’s so brave!”

She and I were talking at a party. (We had noticed each other’s diabetes kits and the inevitable bonding session had ensued.) I had just mentioned that I spent the last three years in three different countries: Estonia, the United Kingdom, and Germany.

When I mention my travels many people act surprised, and I’m never sure how to respond. To me, being “brave” means being afraid of something and doing it anyway. I’m a cautious person who avoids taking risks. The prospect of dealing with diabetes abroad didn’t seem particularly scary to me—if it had, I’m not sure I would have done it.

But this conversation with a fellow diabetic made me think back on my decision. Should diabetics necessarily view traveling to a different country as a frightening experience? Or can it be a beneficial and informative one?

There were many factors that alleviated potential causes of worry for me. Rather than hopping from one locale to another, I led a settled life in three different places. In Estonia, I was doing research on a Fulbright scholarship, in England I was enrolled in an MA program, and in Germany I was volunteering with the organization Action Reconciliation Service for Peace. In each different city I had an endocrinologist and knew exactly where I could buy medical supplies. Nothing was left up to chance that wasn’t up to chance in the U.S.

I was most nervous before I left for Estonia. It was the first time I’d be out of the country for an extended period of time and I had no idea what to expect. Would my diabetes supplies be available? “And what about an endocrinologist?” my parents asked me. “Are you sure there’s one nearby who can speak English?”

This was a fair point. I didn’t speak a single word of Estonian. I emailed the Fulbright coordinator, who emailed the Fulbright contact at the American embassy in Estonia. She gave me—to my great relief—the name of an English-speaking endocrinologist in Tartu, the city where I would be living.

Once I had bought an Estonian cell phone at Kaubamaja, an Estonian department store, I called the endocrinologist’s office and set up an appointment. The receptionist was as chatty and cheerful in person as she had been on the phone, but the doctor was quiet and didn’t crack a smile. Although she offered to do “tests and things” in addition to giving me prescriptions, she seemed relieved when I declined (as I was planning to see my American endocrinologist when I went home for Christmas).

I got into the habit of buying my insulin and other supplies at the Raekoja Apteek, the pharmacy in the pink-and-red town hall. The only change I needed to make in Estonia was to switch to insulin pens instead of the vials and syringes I had been using until that point. This wasn’t a problem; once I got used to the pens, I liked them more anyway.

Diabetes care in the UK was even better. In fact, thanks to the National Health Services, it was the best I’ve ever experienced. If you watched the opening ceremony of the 2012 summer Olympics in London you might remember a sequence that involved nurses dancing around huge hospital beds. To the uninitiated this paean to the National Health Services might have seemed bizarre. However, as someone who had directly benefited from the British system of healthcare, I watched the whole thing mentally cheering Yay, NHS!! (even if the dance was a bit strange).

Brunch in Norwich

Since I was a legal resident of the UK, all of my doctor’s appointments and supplies were completely free. My university’s medical center and pharmacy were only a five-minute walk from my dorm, and I received a note in my university pigeonhole advising me to make an appointment when the podiatrist and ophthalmologist would be visiting campus. Diabetes care couldn’t have been easier.

In fact, my biggest difficulty with diabetes control in Estonia and England wasn’t a lack of supplies, facilities, or doctors. It was my own mentality. I entered the experience of living abroad as if I were going on a very long vacation. It’s okay if I mess up every now and then because I’m away from home—I’ll just deal with everything again once I get back. This approach might work if you’re away for two weeks, but not if you’re away for two years. I knew that my diabetes control was slipping. I couldn’t even remember the last time I’d had my A1C tested.

My mentality changed—was forced to change—once I got to Germany.

I went to Germany to do a year of volunteer service at the Neuengamme Concentration Camp Memorial in Hamburg. For the first month I attended a language class in the city center every morning. One day my classmates and I were commiserating about the amount of bureaucracy we had to deal with as foreigners; even the smallest of privileges had a string of formalities attached. One girl from Romania joked that she’d decided to marry a German man just so she’d be eligible for a decent cell phone plan.

 

Then a man from India spoke up. “Actually, I don’t mind the bureaucracy. Where I come from, things are completely corrupt. There are many ways of getting something, but they all depend on how much money you have. In Germany, there is only one way. But if you do everything correctly, than you can be sure you will succeed. It’s fair.”

It was my experience with diabetes in Germany that made the truth of this sentiment sink in.

I found my endocrinologist in Germany by printing out the Google results of a search for  “endocrinologist” and “Hamburg” and then calling each office on the list in turn, asking if the doctor was willing to take on new patients and whether she or he spoke English. The first doctor who met both criteria was located an hour and a half away from the memorial by public transportation.

I made an appointment in the afternoon and left work after lunch. When I arrived at the doctor’s office I signed in with the receptionist and gave her my ID and insurance card.

“Hmm.” She flipped my card over and frowned at it. “Private insurance? We will have to check this to make sure it’s good.”

“Oh.” I was taken aback. Was there something suspicious about my insurance—or me? “Okay, sure…”

Later one of my coworkers explained that most people in Germany have Gesetzliche Krankenversicherung, state-sponsored health insurance. My volunteer organization had opted to give me private insurance instead. In many ways, this worked out to my advantage: I could visit a specialist without a referral, and I received full reimbursement for all prescription-based medicines or medical supplies. But, my coworker explained, German doctors are often extra-cautious with private insurance because they, too, want to be sure they will receive reimbursement.

After I sat in the waiting room for an hour, the receptionist returned, shaking her head. “I’m sorry, it’s too late today. The woman who deals with these things has already gone home. I tried to fax the insurance company, and they aren’t answering, either. Can you come back tomorrow?”

Tomorrow? I thought. This wasn’t going to look very good to my boss. I had just missed half a day of work already. But of course there was no way around it. Rules are rules, and my endocrinologist wasn’t going to do anything unless she was sure she had proper authorization.

Soon I realized that even though there are annoying things about German bureaucracy, there were also benefits for me. Every three months I had to go in for tests or else I couldn’t get any more prescriptions. This forced me to get the regular blood work that I had put off in Estonia and England. My A1C, which had been high when I first arrived in Germany, steadily dropped.

My doctor’s thoroughness paid off for me in an unexpected way, too. A week after I had my third batch of tests, I got a call on my cell phone from my endocrinologist’s office. A doctor—not my normal doctor—was on the other end. He seemed quite upset. I didn’t understand what he was talking about, but whatever it was, it sounded serious.

“One moment, please?” I thrust my cell phone towards my coworker, who had been looking at me in concern. “Can you talk to the doctor for me?” I whispered.

She took the phone and began to chatter away in German. It turned that the doctor was saying that my blood work had shown that I had severe anemia. He wanted me to visit a GP as soon as possible.

I told my mom about this as we skyped that evening. She asked what I’d been eating. “Well, that sounds fine,” she said. “Maybe you’re not absorbing enough nutrients. When you go to the GP, you should ask him to test you for celiac disease, too. Honestly, you should probably just go on a gluten-free diet—I’ve been saying that forever!”

My younger brother was diagnosed with celiac disease when he was 13. I was tested a few years later and the results were inconclusive. Since I didn’t get any symptoms when I ate gluten, I interpreted “inconclusive” to mean “ignorable,” and continued to follow a diet that can best be described as gluten-rich. The summer before I left for Estonia, I asked my doctor about the results again. Her answer still left me some wiggle room: “Yeah, it’s probably better if you avoid gluten. At least usually. I mean, say someone has just baked rolls and they smell great and you really want one, then it’s okay, once in a while…”

My German GP, on the other hand, didn’t know English well enough to mince his words. “Yes,” he said, after doing a blood test, “you have celiac disease.”

This, I thought, was finally a situation that required me to be “brave.” Or at least, I would have felt brave if I had decided to go to another country knowing that I had celiac disease and not knowing what gluten-free products were available. Now that I was already in Germany, I didn’t have much of a choice.

Luckily eating gluten-free in Germany didn’t prove to be as difficult as I’d feared. I emailed a German friend whose boyfriend also has a wheat sensitivity. She called me with a whole list of suggestions. Thanks to that and a process of trial and error, I quickly became as familiar with the pros and cons of different German gluten-free brands as my brother is with American ones. While eating gluten-free can still be frustrating at times, it’s become second nature to me.

When I think back on my experiences with diabetes abroad, I realize that Is it brave to go abroad having diabetes? isn’t really the best question to ask. A better one might be: how will diabetes impact the experience you have? Having a health condition like diabetes will force you to have unexpected interactions, which in turn can give you unexpected insights.

In Estonia there were times when I would ask for a box of pen needles only to be told, “We don’t have a full box.” The pharmacist would pull out a box of needles, count how many were left, and charge me for that number. When I asked why this was, the pharmacist shrugged. “Well, some people only need to give themselves a shot once a day, so they don’t like to buy so many at once.”

In Germany I had another run-in with bureaucracy. After my year of volunteer service, I began a new job at a publishing company. I was late to the first staff meeting because my blood sugar was low and I had to scarf down some glucose tablets at my desk.

Afterwards I apologized to my boss and explained what had happened. She reassured me that it wasn’t a problem. “And you know,” she added, “there are three people in this company who are especially trained in first aid. If you like, I can set up a meeting with them so that they know what to do if there’s an emergency.”

All three of my coworkers were friendly and interested as I gave an overview of diabetes and explained about taking insulin. Then I explained that if I fainted, they would need to inject me with glucagon.

“Yeah,” one of them said. “I don’t think we’d be allowed to do that, legally.”

I looked at their apologetic smiles and felt unsettled.

Other interactions were positive and touching. My boss at Neuengamme let me miss work for my endocrinologist appointments without taking vacation days. My Neuengamme coworkers couldn’t have been more helpful. Knowing that I was nervous about speaking German on the phone, they offered to call the doctor for me and made detailed notes of the doctor’s instructions. Once I went out to dinner and couldn’t find my diabetes kit when I came home. I realized that it must have fallen out of my bag at the restaurant. I had an extra kit, so it wasn’t a too big of a deal for me, but when I went back to the restaurant the next day and asked for the original kit I was greeted with an exclamation of relief from the manager. “Oh, we were so worried! I stayed here until one in the morning, hoping you would come back!”

It turned out that the woman I met at the party knew a thing or two about bravery and diabetes. She had been diagnosed in the 1970s, when good control meant “not ending up in the hospital.” Even so, she had studied abroad in France a few years after this diagnosis. I’m sure having diabetes affected her experiences abroad. I hope I meet her again so I can ask her how.

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Wendi
Wendi

Becca,
my sister lives in England and is considering moving to the states (PA of all places…so you could be a real help) with her son who has type one diabetes. I want to help her move here as I live in NY and want her to be closer..but she has too many concerns as to the cost of medical costs for her son. Since you have been around and live in PA could you tell me more about costs or insurance for diabetes? Or is it just a matter of getting a good job where it is covered?

Piret

Thanks for sharing your experiences and greetings from Estonia!

Catherine
Catherine

Your post reminded me of my own experience trying to get an A1c drawn in Estonia — that was an adventure! Thanks so much for sharing your experiences. 

Sarah
Sarah

What lovely-sounding wait staff. 1 in the morning?!

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