Humans of ME/CFS
I always was healthy, I felt pretty and happy with a lot of energy and a lot of plans. When I came to US from Cuba 15 years ago, I wanted to get the world for myself, I wanted to enjoy the life I was pursuing. I worked very hard, trying to fit within this new country and I feel I got it!!. However, about six years ago, I started feeling tired and after many doctor visits and lab tests completely negative I ended with a diagnostic of depression. Even my husband and family members did not believe I was feeling sick.
It was very frustrating and sometimes humiliating and misunderstood. My life changed from shining gold to wet charcoal, from white to black, no more happiness, cannot enjoy my son's activities, I had to quit from work, and it has affected all my dreams and my life. I always said "I am not ill because I am depressed, I feel depressed because I am ill." Now, I mostly live confined to my house with the terrible sensation that soon I will be also confined to bed.
It seems nobody could understand, at some moment I believe that everything was in my imagination and went to the psychiatrist, yet things were worst. I also considered suicide, but decided to fight for what I considered best: HOPE.
Recently, at Florida NOVA SE center for the immune diseases, they found real evidence that my immune system is working wrong, my pain and general illness is REAL, not imaginary. Previously, I saw many doctors and specialists who told me CFS/ME does not exist, "It is a name given when nobody can't tell you what you have." Whatever the name is, it is REAL, and we need help.
Here at US, family doctors are not prepared for this situation, they don't know about this sickness and then, they cannot diagnose it. Early diagnose can help. We need to fight for funding for research and support from media and press. We need to fight for the insurance to cover the treatment even if it is not a definitive cure because being ignored and isolated is the most terrible thing a human being can face.
The minimum relief is seeing as immense love and gratitude. Ignorance is obscurity, we need help from our family, friends, doctors and community to be able to float while a cure is found. I want to be happy again.