Jan Equiluz had to give up his passion. He was studying trumpet and psychology when he fell ill. He wanted to become a professional musician and was well on his way to achieving that goal. But a coronavirus infection that led to ME/CFS changed everything. Even listening to music is far too stressful for Jan today, let alone playing an instrument. Jan had to give up studying the trumpet and later also take a break from studying psychology.
“It’s so frustrating,” says Jan. His mother is a doctor. She soon suspects what is wrong with her son. As a result, Jan receives a diagnosis and the best possible treatment faster than most. The few doctors with ME/CFS expertise in Austria are almost all private practitioners—unlike many others, the family can afford this.
But Jan still loses almost everything—ME/CFS destroys lives, no matter how privileged you are. Jan moves back in with his mother. Coping with everyday life on his own is impossible. His room is filled with many of his nonfiction books, which he can no longer read, and his instruments and CDs, which he no longer uses. Jan spends most of his time in bed. When his mother comes home, they spend the evening talking. On good days, Jan can walk to the pharmacy around the corner.
About once a month, Jan meets his friends at their regular hangout. “I need to get out and experience everyday life, at least for a little while,” says Jan. Even if he has more and stronger symptoms afterwards. Isolation is still the worst thing.
Sometimes Jan’s anger boils over. Anger because so few people take ME/CFS seriously. Because more intensive research is not being conducted. Because hardly anyone is speaking out, even though the situation of those affected is so precarious.
But it doesn’t help. Jan tries to make the best of it. In the fall, he wants to resume his interrupted psychology studies and attend at least a few lectures.
from home. But his university has no plans for accessible teaching that would help him. He is told that attendance is expected. He can only write to the lecturers individually and ask for special arrangements. This is an additional burden. Jan tries it anyway. “I don’t know if it’s wise, but I need it to keep from going crazy,” he says.
