16-year-old girl
I’m 16 years old. I’ll soon be 17, will have finished 10th year and live a completely normal life: meet friends, do inline skating and follow my interests.
I don’t look any different from others of my age. But my story is somewhat different from those of my classmates:
I already often had pain in the joints of my hands, if I moved them, when I was in elementary school, but since about 7th year I’ve had it more often. And not just in the hands but also in the joints of my feet.
I went to the doctor, but he couldn’t explain the pain and so referred me to a specialist. But he had similar problems. The same old spiel was often repeated, always when the pain got more frequent or worse. With time there were more painful places, knee and hips were added. They were the most painful places along with the hands, but also the shoulders and elbows weren’t spared. At some point I got bandages and splints, but they didn’t really help either, at least not for long. Besides, they were ugly.
Later I got pain medication, which I was soon taking several times a day.
When that also wasn’t helping anymore, the dose was increased. I decided to avoid painful situations, got excused from physical education and didn’t do strenuous things such as evening hikes and Red Cross competitions.
From eighth year the situation got worse again. The pain got worse and was there even when I didn’t move. The results of that: more medication!
At some point I decided not to tell anyone when I was in pain. Friends, family and also most of the teachers were always understanding and cared for me, but I was tired of the constant sympathy and was especially afraid of annoying my friends with my complaining.
Besides there were also people I was sure wouldn’t understand my situation. I noticed this in statements like, for instance, “Is it really so bad?” or “Don’t go on like that!” or also just strange looks. It was mostly classmates I had little or nothing to do with. (But also some teachers.)
Anyway, at some point I had developed a standard answer “Good!” to the very often asked question: “How are you?” It spared me many unpleasant questions.
Since doctors somehow had nothing helpful, I tried cooling. It hurt even more. After that I tried warming. It was at least somewhat better. I didn’t withdraw completely but gave up hobbies like handball and playing violin due to the pain.
At some point a doctor recommended the Datteln Children’s Pain Center and I got an appointment there. Although I hated doctor’s visits, I was looking forward to this one.
It was made very clear to me in the clearest and most urgent terms that I was taking too much medication and that I should be admitted to the clinic as an inpatient. The first tip that was given to me was: distract yourself!
After the appointment I knew that I had to change something and started to decrease the medication. I started to play soccer again and go swimming. It hurt a lot at first but I wanted to be pain free again.
Furthermore, I started to change my perspective and told myself that everything would be okay again. I reflected a lot for a few days and so became aware that I had been thinking about my pain much too often and had seen everything much too negatively. From then on I began to seek out the positive things in life, to find them and value them. I knew that my joints weren’t broken. (X-rays had confirmed this.) Strangely enough the pain kept diminishing.
When the time for the inpatient stay came, the pain was already much reduced. Nevertheless, it was still there and my school performance had worsened, so I wanted to involve myself fully with the pain therapy in order to be able to concentrate better again.
The time on the ward was the greatest! It was like a vacation or school holiday.
Doctors, therapists and nurses, but above all the other patients were unbelievably great! The team spirit was unique and I had so much fun! I also learned a lot:
- What chronic pain is
- How it arises
- What makes it worse
I learned ways of turning my thoughts away from the pain and distracting myself. This worked best with various perceptions, for example, seeing, hearing and feeling.
After being discharged I was the pain expert. I received a lot of confirmation in what I do and was so highly motivated and still am to fight against the pain that’s still there.
At that point I only had pain when I did sports, and I have got that under control by ignoring it or by other techniques.
But as only I, the new expert, knew what was good for me and what not, it was somewhat difficult to ALWAYS implement what I had learned at home and in daily life. Practice the techniques and make time for relaxation. That takes a lot of self-discipline. Once I had a lot of bad pain, even when doing nothing, but they explained to me that that’s normal and can still happen now and then.
In Datteln I started writing and I now write poems and philosophical texts. I find it so much fun and I have discovered a new and great strength in myself. I have become much better in school and make sure that I take care to do well and hold on to positive things and above all NEVER give up.