I grew up in a family where being physically active was the most important thing. So you can imagine my dad’s reaction when I got diagnosed with JIA at the age of 15; it was as if his whole world collapsed.
I still remember the first thing he said to me, “I’m pretty sure I know what caused this, it must have been your dance classes.” Dancing was the only thing I did for myself.
Every doctor I went to told me that they had no idea what could have caused the disease, but my dad was sure that it was all my fault.
Looking back, I shouldn’t have taken his words to heart. But there is a different type of guilt when your own parents tell you that you not only caused YOUR pain, but theirs as well.
Because, it’s true, they lost something too when I got diagnosed.
My family trips turned into monthly check ups at the hospital, my daily bike rides turned into weekly ones, my going out days turned into injection days. Of course there are good and bad days, but there must be immense pain in knowing that your child is going through something and you can’t do anything about it.
BUT this is not our guilt to carry.
I was asked to join my cycling group for a 200km ride. I knew I was in no shape to do that at that moment, but the guilt of letting down my parents pushed me into agreeing. With that being said, of course I quit midway and had to go home; the experience proved to be a great lesson. I knew from the day before that I would probably not be able to do it, but I insisted on doing it for my dad. Which resulted in quite a few days spent in bed to recover. During these days I saw my dad in a position I had never seen him before. I realized that I was not the only one experiencing that guilt. Even though he constantly pointed the blame at me, he was actually the one he held responsible.
This was not the only lesson though. The most important one in my opinion is to trust that our body is telling us its limits at all times. Our most important responsibility is making decisions that serve our needs and health.
When the usual person gets sick, they obviously take a bit of time to recover and most people can relate to that. However, it gets complicated when people can’t relate to you anymore due to having a rheumatic disease. Then, it is hard to empathize and realize that it is not the same for people with JIA because we need more time and resources to recover..
Most of the time, guilt comes from the fear that we may let other people down while taking care of ourselves. Just because someone doesn’t understand what we are going through, it doesn’t make our struggles any better or less important.
You are allowed to take time for yourself, to put yourself first and to acknowledge that you are in fact the one living with the disease and therefore the only one who truly understands your way of living.