Can we be unhappy or do we keep on with that unbreakable spirit which people with OI all seem to have? Why do we want to be so happy? Think about this with me for a while!

Imagine: you were a 2 year old toddler and your mother or father asks you to draw something simple like a tree on a piece of paper? Right, you grab a pencil and start to move the pencil over the paper making scratches while you look your mother or father into the eyes waiting for their affirmation… 

How did your mother or father react? Of course she or he put on the high pitched voice and produced some words like: “Wow, what a nice tree you just designed! That’s amazing!”. Nothing on the piece of paper has the shape of a tree… 

But that’s what happened right? 

We do this all the time towards toddlers because it makes them happy. And we as humans want to make others happy. Even if what they do is not good or correct. 

Happiness is imprinted from the moment we start to communicate with each other. Since we are born: Baby don’t cry, be happy!  We believe that when we feel happy, we feel better. These days, everybody has a pressure to be very happy. We are all on social media, seeing how everyone else is so happy. 

But to be honest, if I look around me, I see a lot of the opposite. Especially in the age group between 15 and 35. The ones who have spent their youth on social media. A lot of friends my age and even a lot younger are suffering from alcohol and drug addictions, depressions and burn-out. And it starts a lot earlier than it used to. 

We all want so much. We want good grades in school, and good scores on the sports team, and the boy- or girlfriend who is the most popular and perfect parties!  

When we graduate and look for a job, we want the best job we can get. With all the extra bonuses we can get, like a car, a phone and a laptop. We want flexible hours, so we can arrive and leave work when we can. And it goes on. To get that job, we need to search for a long time, and I see that young people just stay home waiting for that job to come along. Instead of doing something else which is not that perfect, we can’t handle the fact that we would be a little unhappy with that temporary job. 

Maybe, for young people with OI it’s different? Because we have our relatively severe disability, we can’t expect things to go so smoothly. Like finding the best girl- or boyfriend, or the best job we can get? We are resilient enough to fight against things that doesn’t go so well in our lives. 

Are we…? 

In 2016 I was in Orlando, Florida attending the national American OI-conference. I was there with around 350 others with OI. I’ll never forget the first evening when we did a “walk” in the hotel complex we stayed in. For me it was very weird to go out and shout about how great it was to have OI. I was a little bit shocked because of the enormous amount of other people with OI and the extreme positive approach towards OI.

But to be honest. After 3 days being there, hearing all those positive ideas about having OI, I started to believe it a bit. And I understood that it is a lot easier to cope if you can regard OI as a kind of a blessing. However weird that might sound… 

So yes, it is possible that we can “get up again” more easily after a negative life experience than people without OI. Because we have learnt how to do it since an early age. 

But when you have to do this many times during your lifetime, sometimes it all becomes too much. And then we have to be aware and allow ourselves and others to feel unhappy. It is not a blessing to have OI after fracture number 142 or so. OI can really be a pain in the ass, or let’s say in the bone… 

Maybe we need to learn the art of being unhappy in order to better understand our own feelings…?  

Written by Stephanie Claeys, OIFE Youth Coordinator