Mila and Sabine Hermisson
My name is Mila. I am 20 years old and very seriously ill with ME/CFS. I know that people who are not affected themselves can hardly imagine that. That’s why I would like to tell you about it here.
Since November 2020, more than 20,000 hours, I have been lying in my bed in total darkness. I can hardly move my arms and legs anymore, I can no longer eat alone, I can only sit for a minute at most and I haven’t spoken for two years. When I want to communicate something (like here), it can only be done on good days when I form letters with my finger.
But the worst thing is the uncertainty, the fear and the total loneliness. Even my cat is too tiring and can’t be with me anymore. My parents and carer are only in the room for the most necessary tasks. Everything has to happen quickly and as calmly as possible to avoid sensory overload and further crashes.
Life goes on outside. My twin sister and my friends graduated from high school, went abroad and started studying. I am trapped here, hour after hour, day after day, month after month, in solitary confinement, buried alive.
I was 15 years old when I was unable to recover from a viral flu in the fall of 2018. In the first few years, with great effort, I managed to finish the 10th and 11th grades. Now I know that wasn’t good for my health, but I had so many plans. I was used to not losing optimism and going my own way despite difficulties. Today, after my serious crash, I only have hope that the illness will finally be recognized, that there will be research and therapy as soon as possible.
ME/CFS is a terrible disease that takes away my youth and can completely destroy a life. There are many thousands of people affected and anyone can get it. It’s hard to believe that there is almost no medical care, shocking lack of knowledge and ignorance among many doctors and far too little research.
Please: I’ll try to hold on as best as I can, but I — we! — need help. We need care structures that every sick person is entitled to. ME/CFS and other post-viral illnesses must become a focus of medical education and training. And we need biomedical research and clinical studies so that treatment options can finally be found. Please take the thousands of suffering and the experiences of those affected seriously and take action. Thank you.
Learn about ME/CFS
Video, 1:32 min
“The video was created for the upcoming visit of journalist Nina Weber from Der Spiegel. Originally, Mila had planned to briefly communicate directly with Nina Weber. However, as the visit was approaching, it became clear that this would be too strenuous. So we decided to make a short video instead and asked Mila: What would you like to say to the readers?
Her answer for non-German speakers: ‘LER SUR ME’ = ‘Learn about ME/CFS’ in a mixture of German and French for brevity.
We are used to Mila communicating in English. That she added French because SUR is shorter than ABOUT was a first-timer for us, which is why it took us ages to get it.”