Sports, traveling, learning—Carmen loved all of these things. But she lost all of that and much more. Carmen was studying for her master’s degree in transcultural communication when she fell ill. She speaks four languages and has lived in France twice.
Despite being vaccinated, she became seriously ill with ME/CFS. She has not left the house for almost four years. Carmen spends most of her time lying in the dark, all alone. If she spends ten minutes with her mother Erika Siebenbrunner, that is already a lot.
On good days, which are rare, Carmen can take a bath with her mother’s help. When possible, she writes to friends or educates people about her condition on social media. Often, both are impossible.
The daughter’s isolation also leads to the mother’s isolation. Her life now consists only of work, shopping, and caring for Carmen.
Carmen knows exactly what she needs: strict rest, sticking to her limits, reducing stimuli. She is afraid of measures that could make everything worse. There is a lack of rehabilitation programs that are truly geared toward severely affected individuals. When Carmen needs medical advice, Erika calls one of the few private doctors with expertise in ME/CFS. These doctors are also overwhelmed.
Thanks to strict adherence to her limits and medication that helps somewhat, Carmen is now feeling a little better. Nevertheless, her everyday life remains extremely restricted—and hope for progress in research and care is crucial.
