Twenty-year-old, Linda, from Sweden shares her story about getting ME at the age of 4, living with a mild version of it, which has since turned severe. Originally posted on #MillionsMissing Sweden’s Facebook page.
Isolated from the outside world, stuck in-between four walls, trapped in the prison of my own body…
I was only 17 when severe ME turned my world upside down and robbed me of everything I know. My name is Linda and I’m 20 years old. I’ve spent the last 3 years of my life lying in a dark and silent room. I can’t sit up. I’ve been tube fed for the last 2 years because of difficulties getting enough fluids and nutrition. Every movement, light and sound causes severe worsening of symptoms.
I miss eating real food, I miss seeing the sky, I miss all the little things in life that you easily forget to cherish, and I miss the life that ME stole from me.
Since I got ME at 4 years old I’ve been met by misconceptions and ignorance about my disease. I had mild ME to begin with, and if I had gotten adequate health care and treatments when I needed it, I never would have been bed bound. Instead I was misdiagnosed and had to endure repeated mistreatment by doctors with lacking knowledge about ME.
Because of being forcibly activated by the medical team, the wrong advice about how to handle the disease, and because I haven’t taken the disease seriously myself, I have now gone from the mildest form of ME to the severest form. It took over 10 years before I got the correct diagnosis, and during that time my condition seriously worsened. Just like many other ME patients I have suffered from incredibly inadequate knowledge about ME in society, and I don’t want to see more patients face the same fate.
There’s a need of awareness and knowledge about ME. The world needs to see what this disease is, before more people suffer like I, and so many others, already have.”
(Translated from Swedish.)
Be sure to attend the telebriefing by the Trans-NIH ME/CFS Working Group this Friday (10/22) at 3PM ET. The National Institutes of Health (NIH) has many questions to answer about its lack of tangible progress or strategic acceleration of medical research for people with ME. Read Our Questions for NIH ME/CFS research opportunity being missed