Mirthe van den Berg

I am Mirthe, 28 years old (b. 1997), and I live in the Netherlands. My health journey started around 10 years ago, but it wasn’t until years later that I got diagnosed with ME/CFS (after a Lyme infection), followed by POTS and, recently, lupus-like disease.

It was always pretty easy to predict how my illness behaved, so I managed to find somewhat of a balance and routine in life, knowing how my body reacts to the things I do. I was able to go on vacation sometimes or do fun things—even though I struggled a lot. I tried to work and study until I had used up my little bit of energy and, as a result, had to rest for weeks at home.

Most people who crossed paths with me in life never knew anything about the difficulties I had to overcome daily. I managed to look fine or even normal. I pretended I was fine for so long that, at some point, I even convinced myself that I was. That it was normal to feel exhausted, not being able to keep a job, finish school, concentrate, exercise, or sometimes even walk or brush my hair. I told myself it was my fault for not trying hard enough. I decided to start my own small business as a photographer so that I could work and rest whenever my body needed.

After years of struggling silently, I was prescribed antidepressants by my doctor, concealed as ‘harmless drops to help ease my stress.’ I trusted my doctor—so I took them. Unknowingly, I had just made the biggest mistake of my life.

My health deteriorated quickly to severe ME/CFS and POTS, and what followed were two years of being fully care-dependent and lying flat 24/7. I lost consciousness several times a day, could not process any sound or motion, and even started to hallucinate. My body was beyond exhausted.

We figured out on our own that the meds must have been causing my worsening health, and I decided to quit. Shortly after, I stabilized. Since that moment, I’ve been slowly healing.

Today—five years later—I’m still housebound most of the time and have a long way to go to get back to where and who I was before the medication, when I was living with mild-moderate ME/CFS and POTS.

The one thing that my illness has brought me is finding my voice, and I now choose to use it to speak up and raise awareness through art.