My name is Roberto, I’m an Italian 40-year-old who lives in Rome.
First of all, sorry for my English, I’ll try my best.
I was diagnosed with dermatomyositis (DM) in April 2015, and at the time I had so much muscle pain that I didn’t know there were so many muscles in my body that could hurt me. My CK level was up to 25000.
Since then I had a flare almost every year and it always takes (robs me) at least 3 months to recover. My last flare was in March 2020 and I’m still at home trying to go back to normal life.
At the beginning of this journey, I didn’t realize that my life will totally change forever. Now after five years I learned so much from me, and last year I started to search on the internet for kind of myositis community. Unfortunately, there isn’t anything here in Italy, in fact, I don’t really know other people with myositis, but I was fortunate to find first TMA and then MSU and finally, I’ve people who really can understand me.
What I learned in those years is that this disease is not just pain, weakness, and fatigue, this is about mental toughness. I was knocked out multiple times but I was able to get up thanks to a positive attitude.
Initially, it was looking at my family, my wife and children. I thought: “I can’t quit, they need me”. But today, I started to think a little bit differently. I recognized that it’s just for me. I need to stay mentally strong for me. Just for me.
What hurts me more about this disease is that people really don’t understand what I have to deal with each day of my life. Even the closest in my life, they don’t really understand. Each day is a fight. I’m fortunate to still be able to go to work, even if at the end of the day I’m really tired. And then when I’m back home, I still have to cook something for me and my family.
My closest friends look at me and they tell me that I’m looking good, but they don’t understand how much fatigue or weakness I have. My family is still confused about drugs that I’ve been taking for 5 years. They didn’t make any kind of research about the disease, and they almost never went to doctors with me. I did all this stuff alone. Talk about my condition is always annoying. That’s hurt more than pain.
Being mentally strong and having a positive attitude is really hard, and sometimes when I struggle with it, I realize that I’ve to find a solution by myself, because at the end of all this is my disease and I’m alone with it. So I need to stand up, alone. Search for a new motivation each time, look inside me and rise again.
I hope to continue to be strong enough because what I fear most is to lose this attitude and find myself alone.