Humans of ME/CFS

I was a hard-working person, engaged, active, recently married, and was making all sorts of plans with my wife to lead an active and amazing life. Then one day my entire world changed. After months of fevers, night sweats, severe joint pain, overwhelming fatigue, infection after infection my body said, “ENOUGH!” I remember that day, the day I could not get out of bed anymore. I saw doctor after doctor, took test after test but had no answers. I was blamed, treated like a nuisance and even at one point it was suggested I seek mental help. Yet, science kept proving something was very wrong in the labwork.

I saw that mental health professional. She looked at me as I sobbed in her office and said “Kristina, you aren’t crazy… you are sick.” I felt like finally someone believed me. After researching all my labs and trying to find answers to how this could be fixed, I found a doctor on a support website. I made the appointment and waited. My first visit with him was unlike any other. He listened, he was compassionate and he assured me we would figure this out. After running more tests, it was discovered I was VERY SICK. I have three viruses responsible for this and thus began my very aggressive treatment with IV antivirals. I wanted my life back. I wanted to be able to clean my house, spend time with family and friends, WORK, do all the things that regular people don’t even think about. Treatment was grueling, but slowly and steadily I was making progress. I could feel it.

Then, the unthinkable happened. My doctor passed away and I was back to square one. At least I knew what was wrong with me but now the hardest part came in finding a doctor to continue my treatments. As the months went by and no doctors were willing to help, and the ones I did see were more focused on trying to find other explanations for my disease, I could feel all the progress I had made with my previous doctor being undone. I was sick again. I was angry and resentful that I have a disease which has so little understanding and so little care from the medical community.

We need more doctors. We need more research. Too many of us are sick, dying, and merely existing. We need to find a cure or at the least a way to manage this disease. I am 43 years old. I should be enjoying my life. Instead I am imprisoned in a body that continually betrays me, doctors who don’t understand this condition, little options for treatment and a life wasted… my potential, my relationships, goals and my dreams put on continuous pause. I am constantly battling. Battling insurance, doctors, the fatigue, defending my being ill and defending what little control I have over an unwanted disease. I am asking now. Please help us!