My name is Hannah.
I have been living with ME/CFS for more than half of my life. On behalf of people with ME/CFS, I am now supporting NMCB. This is a collaboration of researchers and others involved in the field. We aim to better understand ME/CFS and improve the lives of those who have it.
There is still much to be done. Through research, we will ultimately gain more knowledge about ME/CFS. Hopefully, this will lead to effective treatments. However, many people with ME/CFS still aren’t understood. Their suffering is often minimized, or there exists a negative perception about those with ME/CFS.
That’s why I find it important to share my story. For anyone who can relate, but also especially for researchers, healthcare professionals, and others who want to learn more about living with ME/CFS.
I was almost twelve when it began for me in a mild form. Normally, “mild” suggests something isn’t so bad. But with ME/CFS, “mild” still means you can only do 50% of what you used to.
Despite feeling constantly sick, extremely exhausted, and in a lot of pain, I managed to obtain my diplomas with some delays. But I missed out on the typical experiences of other children and teenagers. The little energy I had was dedicated enterely to school. There was nothing left for friends, hobbies, or other activities. I felt ashamed of this, so I never talked about myself.
I felt so lonely! Especially because I was struggling so much and nobody really understood me. Not even the doctor, who always thought I was young and just needed to exercise. But that only made things worse.
I briefly worked as a WMO assistant. It was conflicting because my own health was deteriorating. My household chores were neglected, and when I was at home I could only manage to lie on the couch. Working gave me a sense of satisfaction, but it was physically impossible. After a while, I could only manage to work two hours per week, sometimes not even that. I tried to find a lighter job, but soon that wasn’t possible either.
When I had to quit working, under pressure from my family, I decided to visit the doctor again. This time, they did some tests on me. Nothing came out of them, so I was considered “healthy.” Well, I had “CFS” (Chronic Fatigue Syndrom) at least. But according to the doctor, that was a “non-diagnosis” because “there’s nothing wrong with you”.
The gastroenterologist sympathized with me. He suggested a therapy that involved increasing physical activity gradually. According to the sports doctor, this would make me completely better. So, I was eager to try the therapy. I was just getting married, and we had big dreams.
I followed the therapy diligently. However, instead of improving, I deteriorated. Before the therapy, I could sometimes go to the city with plenty of rest in between. I could also do my own shopping and cooking. But during the therapy, I became house/bed-bound, and since then, I’ve needed assistance with many everyday activities, like showering.
There went our dreams, mine and my husband’s!
It wasn’t until thirteen years after everything started that a doctor could tell me what I had. He said I shouldn’t expend more energy than I had, and he prescribed medication that slightly alleviates the symptoms. After five years, I’m doing somewhat better, though still worse than before that therapy.
Yet, I was told to undergo that therapy again. A doctor who was assessing my eligibility for a wheelchair suggested it. However, that therapy was no longer recommended for ME/CFS. Furthermore, she blamed me. She said I didn’t want to walk because I was “afraid of falling.” Throughout the entire conversation, she insulted my own doctor, calling him a “bad doctor” who “knows nothing about ME/CFS.”
Hopefully, people with ME/CFS will be understood and helped properly in the future.
The photo is from a special moment last year. With assistance, I could briefly enjoy nature near my home. I miss that the most. Along with being able to be together with my entire family. Or something as simple as eating ice cream on a wall. My wish is for those things to become normal again someday. And for people with ME/CFS to be able to live their lives again.
