My name is Evelien van den Brink. I fell ill when I was fourteen, and now I am forty. I had pneumonia and didn’t recover well. A few months later, I got the flu, and since then, I have never been healthy again. It was a turning point in my life. I now look back on my healthy childhood years as if it were a kind of celebration, a dream. I did well in school, had many friends, hobbies. And a future. After falling ill, my life suddenly consisted of hospital visits, tests, treatments, and waiting for improvement. But it never came.
In the late nineties, the biopsychosocial view of the disease still prevailed. In practice, this meant that I received treatments based on CBT and GET, which only made me worse instead of better. The more activity was increased, the sicker I became. And the doctors, nurses, and other therapists had no knowledge or understanding of that. So, I was told that I should try harder, that it was my own fault that I wasn’t getting better, that I was exaggerating, and that I should finally take control of my own life. The more I tried to meet the demands and expectations, the more my body broke down. I couldn’t do it anymore. The last specialist I saw said to me, “You know, Evelien, I am very busy. There are many children here who all want to get better, and I prefer to spend my time with them.”
Those words still echo. And the negative impact of the treatments remains present to this day. I am still afraid at every doctor’s visit, for any kind of problem, that I will experience the same thing again. That I will be told again that everything is my fault or that it’s all in my head. Then I feel like that intensely sick fifteen-year-old who was lectured about her lack of motivation and perseverance. Memories of then can still haunt me vividly at times when I need medical care again.
What gives me hope is that with the new research program, a different time has finally arrived. Finally. It took too long for patients to be taken seriously and heard. And the negative elements are still not completely gone. The severity of the disease is still vastly underestimated. I think it’s important for everyone working with ME patients to realize how deep the wounds are. How many heartbreaking stories are hidden behind our names.
What I admire about our ME community is the resilience of the patients and the drive to share knowledge. Despite everything, there is a great willingness to work together with a focus on the future. In 2019, I submitted a petition that led to the first European resolution for ME. This work has cost a lot, and sometimes I wonder if the sacrifices are worth it. But I am convinced that we can all contribute to a better future, one with small contributions and others with larger ones. As a patient representative for the NMCB, I hope to make a contribution, no matter how small it may be.
My friend Michiel and I met each other thanks to the European project. The spark ignited, and since then, we have been together. We are both ill, and that not only presents extra challenges and limitations but above all, it brings understanding for each other and a deep bond. We are fighting together now. And together, everything is better. He also fell ill after an infection and has never been healthy since then. That was sixteen years ago. His dreams of studying, building a career, starting his own life, having children, or even just having a pet, like mine, are on hold.
Nevertheless, we are happy to have each other and we continue to hope for a healthy future.
At the moment, I am still largely bedridden, and complications secondary to ME sometimes make the situation even more difficult. But the care I receive now is better than before. From the reactions of doctors, especially from the younger generations, I can tell that there is slowly a paradigm shift happening. We are far from the point where there are enough doctors who truly understand and can treat ME, but at least the lack of understanding is decreasing. Initiatives and education from the government are crucial in this regard. This can take the disease out of the shadows and counteract stigmatization.
Let’s all continue to strive to refute all prejudices and unfounded opinions with scientific facts. I am convinced that high-quality scientific research is the indispensable basis for progress. This allows room for new scientific insights that can finally lead to effective treatments. That is my dream now.
