My sister Céline has been ill for 22 years now. At first, she suffered an infection. She tried to pick up her normal life again, but she never recovered. Before, she was unstoppable. An energetic girl, always singing and dancing. After, she experienced post-exertional malaise, or in other words: feeling terrible after any effort. The physical energy didn’t last as long anymore, and it never again reached the peaks that it used to.

Over the years, Céline needed more and more rest, recovery time, between activities. Finishing the Dutch equivalent of high school required adapting to how often she was physically able to attend classes. Together with my parents, she looked for a cure or, at least, treatment. Several avenues offered hope. None delivered.

The dominant thinking at the time was that my sister suffered from CFS, chronic fatigue syndrome. This was understood to be a mental affliction. In other words: it was all in her head, or so the doctors claimed. With the right therapy, she would be able to overcome her so-called false illness beliefs. Obviously, my sister underwent the therapy. The result? Her health deteriorated. Systematically ignoring her body’s warnings that she was overtaxing herself, as was recommended in the treatment, had drained her energy even further.

My sister’s future seemed bright. Céline had been accepted at the conservatory, winning a highly coveted spot to train as a singer. She had moved out of our parents’ house. She had landed a place at her dream studies, and she got a room for rent that was her domain. But her illness made life very difficult. She couldn’t attend classes and do her groceries and look after herself all in one day.

Because I lived close by, I often brought her the groceries she needed. We’d hang out and watch tv together. With so much reluctance and pain, she had to admit that even with special arrangements made for her at the academy, she wasn’t going to be able to continue. My sister Céline was living her dream, but her illness was making it impossible for her to keep going.

By that time, it was clear as day to all who knew her that this was not something in her head. She was obviously not going to need to get over herself and just do it anyway, through the pain. She was actually chronically ill. Doctors diagnosed her with ME, myalgic encephalomyelitis.

In the years since then, her life has become emptier and emptier. She had to move back in with my parents, who have looked after her ever since. Daylight was starting to get too bright for her. When she’s awake, the curtains are shut – all two layers of them. We’re careful to not make too loud noises around her, as they result in painful and enduring headaches. A stair lift has been installed to make it possible for my sister to go upstairs and downstairs. Our parents do everything for her, because she is no longer physically able to do almost anything herself, other than lying in bed or on the couch, and eating and drinking little bits at a time. We don’t have particularly deep conversations with her anymore, as they simply require too much brain power.

Today, May 12, 2023, is ME Awareness Day. Far too little is known about my sister Céline’s horrific, crippling, chronic illness. There are others like her, whose stories vary in severeness of the illness, but whose symptoms are otherwise the same. People who suffer from Long COVID report some of the same symptoms. The world needs to learn about ME. Research needs to be done into ME. We need to find out what causes it and how to treat and, ideally, cure it. I wish everybody who suffers from ME the very best. And if one thing is clear to me, is that what is in my sister Céline’s head, is nothing but superhuman strength. So much has been taken away from her by this cruel illness and the cruel reality of the medical science not being nearly as far as it needs to be. My sister, and millions more worldwide, are severely ill. A broader awareness of ME is the first step. We need so much more.