You are not alone with diabetes

It was a rather gloomy day in November three years ago. I had just come home from work and went to get the mail. There was an envelope from my diabetes care centre. I thought it was just the basic invitation to my next endo appointment, but when I opened the letter, it turned out to be something different.

I live in Finland and when it comes to diabetes, a lot of things are done right. We have cheap healthcare and medicines and the government really makes it easy for us to take care of ourselves. We have a national diabetes association with 104 or so member associations. The member associations organise regular meet ups for type 1 and 2 diabetics, though the type 2 events are a lot more common. There are some 50 000 type 1 diabetics and an estimated amount of 500 000 type 2 diabetics among Finnish people. There are 5,5 million inhabitants in Finland, so 10% of us have a diabetes of sorts.

But I digress. Back to the letter! When I received that letter twelve years had passed from my diagnosis. The letter was a formal statement that some background retinopathy had been found from my eyes. Now it is really not a big deal and it is even known to disappear on its own if treatment levels improve. But for me, it was the first time my diabetes had caused something extra. It was a reminder that indeed, this condition of ours is a serious business. I felt really bummed out and depressed. I guess I also felt alone.

Facebook changed the game for diabetics

So out of those 50 000 type 1 diabetics in Finland, almost 5 percent belong to this one particular Facebook group. One media discussion group reaches every twentieth person with diabetes in Finland. It is a crazy amount. I have close to a hundred type 1 diabetics as my personal Facebook friends. A bit over five years ago I knew maybe two or three other type 1 diabetics. At some point I just decided I wanted to get some peer support and started looking up diabetes associations and online groups. I took part in events like diabetic cabin weekends, cruises and was organising them as well through one of the diabetes associations.

When I got over the initial shock of my letter, I immediately reached out to one of my best friends with diabetes, Karita. After an evening of chatting on FB messenger, I felt better and more determined to take better care of myself. I didn’t feel alone anymore. My online diabetic safety net caught me in my time of distress. For me it was one friend, for others it is often the Facebook discussion group. People share really personal diabetes worries there and they always find comfort, support and encouragement from those discussions.

Dottli helps too!

The one thing the discussion groups don’t do though, is this grassroots level peer support. That’s where Dottli comes in. When you log a bg value, a meal or insulin dosage (or anything for that matter) and you have decided to share that kind of information to your friends, the values are instantly shared to this messenger-like chat. And others can comment your values, rate your meals and post their own values as well. All measurements are there for your friends to see and comment. I have received so much insight and motivation from my friends through this kind of automated value sharing.

There is so much support available both offline and online that it is possible to never be alone with diabetes. Once you share your diabetes with fellow diabetics, you will feel better. Trust me.

 

– Miika

The writer has had t1d for 15 years.