I’m 25 years old. My time in Datteln is now almost eight years ago.  I was a patient on the Lighthouse ward when I was 17.

My illness has never been precisely localized. I suffer from “fibromyalgia”, a “whole body pain”, though I must say that according to my experience the word “fibromyalgia” is just a compilation of many symptoms. Included among these are above all pain in all body parts (with me mostly in the back, hips, shoulders and knees), sleeplessness, tiredness and weakness.

Before the whole odyssey that followed began, I did competitive sports at least six times a week. For a year I continued with sports though I was tortured by pain, because sports was my life and I didn’t want to give it up. After I broke down in training at some point, my then trainer sent me to a sports clinic. Then began the marathon of doctor’s visits, stays in hospital, physiotherapy, psychotherapy, and much more. There were many small diagnoses, but none that could have explained the severity of my pain. After many weeks of fruitless stays in various hospitals during which the pain kept getting worse, a doctor referred me to Datteln. Even after that I was once more in a clinic for holistic medicine, but there they unfortunately couldn’t give me the proper tools to deal with my pain. At some point I decided on my own not to waste any more energy on various therapies since with each failure my ever budding hope just turned to greater discouragement.

For those around me my illness and the limitations that went along with it were probably a bit much, but I must say that many of these people unconsciously contributed to my feeling much worse. People who were close to me, such as my family and close friends, were under great strain, which I can’t blame them for. I know that they tried their best to support me, but the time came rather quickly when they were annoyed by the fact that I was always ill, so I began not to talk about it anymore and to sort the whole thing out by myself. I know that above all I burdened my family with it and that they were just simply helpless and so, being doubtful, couldn’t react appropriately. My father didn’t want to acknowledge it and thought he could undo the whole thing by constantly encouraging me to try this or that yet again or to pull myself together. My mother, on the other hand, reacted with constant irritation, and my brothers were always worried about me which then caused me a lot of worry.

In school it wasn’t much better. I often heard that various people said I was just acting and they laughed at me or avoided me.

Through these people I learned to hide my pain as much as possible, and I must say I’ve perfected this now. Meanwhile I’m very glad that I acquired this ability because it’s very important to me that those around me don’t treat me differently and don’t notice that I’m not like the others.

But there was also a very good girl friend who luckily listened to me and went to a lot of trouble to support me. That probably often kept me from sliding further down into the black hole that kept opening up and threatening to swallow me.

 I had all sorts of experiences with doctors. For one there were the doctors who didn’t recognize my illness, yes even denied it and literally told me that I was just imagining it. That affected me a lot. But I also met doctors and therapists who took me seriously and at least had the courage to say to me that they really didn’t know, instead of saying that it was all imaginary. They gave me encouragement. Here I can only wish that everyone meets capable people who on the one hand are open enough to accept things that are not seen clearly in an x-ray, but who also don’t fabricate some kind of hocus-pocus. I also experienced “tone bowls” and rhododendron drops, which “naturally” (my personal opinion) didn’t help either.

On the other hand, my time in Datteln helped me more than anything else and was unique because I met people with similar problems to mine. I also made a good friend here with whom I’m still in contact even though we live very far apart. It helped a lot to exchange information about my own experiences with someone without having to explain too much. That is a very positive experience that I took away from Datteln. Furthermore, they taught me in Datteln that I have to continue living my life as normally as possible without letting myself be influenced by my illness any more than necessary. Nevertheless, there was no pressure built up, as in other institutions, to convince you that it all goes easily and that you only have to work a little in order to achieve the goal of a “normal” life. It’s not that simple, as every person affected probably knows.

Unfortunately I can’t report that my pain was significantly better or even disappeared, but I don’t see that as the only goal now. I believe you too quickly get into a worsening spiral of pressure with this goal in mind. Meanwhile, my most important goal has become to live my life as normally as possible, to take part in as many areas of life as possible. Here you have to accept some setbacks, because not everything works, but what perhaps best clarifies my goal is the following:

During my time in Datteln I had in one session the assignment to look into the future and write down my vision of my worst, my most probable and my best future. I found this document again not too long ago and can confirm that all my wishes at that time have come true. I did very well in my Abitur, finished my BWL-course in my dream city within the regular time, completed a practicum in my dream state, and have been in my dream career in the world’s biggest company in that field for two years. Furthermore, I have been in a wonderful relationship for four years and live with my boyfriend. And all that in spite of chronic pain...

I know that my story doesn’t sound so positive at first; I haven’t been able to conquer my pain, but I have achieved most of what I wanted to and can say in general that I live a good life. I believe that a realistic look at things can help much more than the hope that some doctors, over-worried parents and friends or innovative therapies drum into you. You should believe in yourself, in your ability to stand up to the pain and make the best of the situation.

back