Mila Hermisson lives in a nightmare from which she cannot wake up. Because it is not a dream, not an illusion, but stark reality. Mila is severely ill with ME/CFS. For almost four years, she has been lying motionless in a pitch-dark room—even light causes sensory overload and overexertion. For almost four years, her parents, Joachim and Sabine, have been caring for her. They feed her liquid food from feeding cups. They wash her in bed. They brush her teeth or adjust her sleep mask. Because Mila is too weak to do any of these things herself.
Mila can no longer speak either. “But the worst thing is that she can’t stand it when we talk either,” says her mother Sabine Hermisson. With ME/CFS, every effort is dangerous, even cognitive ones. Every stimulus that has to be processed, every movement, can overload her and drive her even deeper into the illness. On good days, Mila can tolerate individual words. She communicates how many with her fingers. Sometimes one word, never more than two.
Mila used to be an active girl. She played sports, played music, did lots of things with her friends, and played with her twin sister Ella. She was a good student with an interest in science. She was involved in Fridays for Future: “Follow the Science” was written on the poster she carried at demonstrations. Today, all of that feels like a different life. But she still has hope in science.
Mila’s parents have been living in a state of emergency for years. They coordinate care, appointments, and medical aids, trying to protect Mila from any unnecessary stress while still getting the essentials done. The burden is immense—financially as well. The few specialists for ME/CFS in the country are overwhelmed. They try to help as best they can, but home visits are hardly possible due to a lack of resources.
A general practitioner who knows the family from the church community takes on the responsibility. She cannot charge appropriately for her visits—patients like Mila do not fit into the clockwork system, where treatments must be carried out quickly. “A healthcare system that relies solely on the goodwill and humanity of individuals cannot function,” says Joachim Hermisson.
Everything has changed for Mila’s twin sister Ella, too. She says, “No one understands the extent of suffering Mila lives with every day.” She and Mila have a close relationship. “I’m not her caregiver, I’m her sister,” says Ella. She admires how Mila has remained the same despite everything. Despite everything, Mila is interested in other people and wants to participate in life outside.
A friend who spends a few minutes with her in her room. In complete silence, just being there. These are the little good experiences that Mila still has.
