March 30, 2017
I’m excited, incredulous, I’m incredibly surprised. Today, my sister-in-law Yurena, my brother-in-law, as I call her, has called me to get in touch with television so that we can talk and talk about fibromyalgia and the group of help and support that we have created. I could not believe it and suddenly the girl from the Canary Television called me. They really want us to talk about our help and support team, to talk about the blog I write and our illness, the one that seems invisible but that we have the opportunity to make a little more visible with every action of this type that we do. I’m so excited!!!! Indeed, it is something that is so important for people who have fibromyalgia to have a space to make ourselves known and for society to understand our disease and how difficult it is to cope with it and to find ways to lead a dignified and economically healthy life .
I have seen so much misery in some people who suffer from this disease; People who lose their homes because doctors do not believe it and they can not continue working, people who lose their families who do not believe them, people who do not have the understanding of anyone, their friends, acquaintances, classmates, etc. People without pensions, with no possibility of buying drugs, alone, absolutely alone. It is so but so sad.
We created this group of help and support to be able to alleviate some of the side effects of this friend / sister who has touched us. We want to alleviate loneliness, incomprehension, abandonment, unemployment, inability to move, etc. We created this group of help and support so that fibromyalgia sufferers, their relatives and friends feel accompanied, understood, loved.
It has worked; It is hard but it has worked. The group moves well, they contribute a lot to each other for whatssap, for facebook, for the blog that I publish, for the telephone conversations, for the snacks we make, for everything in general. I always put the same example: the other day a partner was operated and suddenly, in whatssap group they appeared as five crutches – maybe I’m exaggerating – and I wanted to cry with emotion, because he walks, walks and goes well , Are supported and taken into account.
All the components of the Network are happy to have other patients and friends with whom they can talk and with whom they feel understood. Empathy is very important in the world, but more important for people with chronic, invisible diseases. Thank you, thank you and thank you. I will try to remember all the people who write us asking for help, giving thanks, giving advice. They will all be in my head, but I will be so nervous that I will not know if I can remember them at that precise moment. I thank you because without you this, my dream, could never have been realized. I thank you because without you, without the confidence you have placed in me and in the colleagues of the Network, this would not have been possible. Now it remains to be able to know and explain clearly what we are and what we do. I just hope I can live up to it.
Thanks for reading, I send kisses and hugs of cotton begging them to share to be able to help more people.