Looking back, I can’t really say anymore exactly when my pain story began, as I often had headaches, very often, but you don’t really attach importance to it all at first. I can remember my problems increasing when I was 15 and on my exchange year in America, in the 11th year of school. I often had to lie down as I had such headaches, but many people said it was normal because I had to get used to “all the English”. I believed that then, too. Anyway, it didn’t get better back in Germany either, which was then put down to my having to get used to home again. My head, my head, my head, I always had a headache. Over 100 hours absent from school in a half year was not unusual. I had always been absent from school a lot, since there were always a lot of problems in my school environment when I was younger (bullying, but also boredom, etc.). I say that not to get sympathy, but because today I consider these circumstances to be among the most important triggers of my illness.

What’s amazing is that I was doing much better after my year abroad, had good friends, was very happy. But the headaches kept getting worse. Which is why I finally started to hide myself away, to not go out anymore, to move only if it was really necessary. I basically just lay down every day after school. Nevertheless in the beginning it wasn’t taken seriously. By many people. I don’t want to accuse anyone of anything because it’s just so damn easy to say “Gee, I’ve got a headache”. It wasn’t a good time.

I also don’t want to withhold the “darkest” and most frightening part of my little story: the pain medications. Awful little beasts. In the beginning they help a lot. But their effectiveness diminishes quickly and you take more and stronger ones. I don’t want to criticize my parents here, but at 16 you get everything to a certain extent from your parents. And I took a lot of pills at that time, about 25 a week. The first every morning at breakfast. Without it my day didn’t get going at all. I don’t know if I was addicted to those pain killers. In a way I guess so, but I didn’t show any withdrawal symptoms or signs of addiction. I just tried to manage. I noticed just how drastic it was when I secretly took pain tablets prescribed for my father by his dentist after dental surgery, and they didn’t work. Furthermore, I got some strong muscle relaxants from an acquaintance that were supposed to relax all the muscles of the body, in the hopes that they would help. They didn’t. And you shouldn’t do that; don’t let things go that far.

Besides the constant headaches I also had other side effects, for example, disturbed vision or loss of feeling in the limbs, though not as constantly as the headaches.

The worst thing that happened to me was two pain peaks that came suddenly and lasted about a minute and were so strong that I collapsed right where I was, screaming and crying. Luckily both my parents were there the second time it happened, so that it was decided that things simply couldn’t go on like that. The turning point? Maybe, but not immediately. Then the marathon of visits to doctors began in earnest. Where do you begin, anyway? First we went to the family doctor. To the massage therapist. For an EEG. A CT. For an MRI. To...to...to...nothing. Never, never a result. At some point you don’t know anymore if you should be happy or sad. It must have been awful for those around me when I first expressed something like “I wish it was a brain tumor, then they would finally find something”. Looking back, of course I regret saying this, but then I just wanted things to move forward. The funny thing is that, as someone living in Datteln, the solution to my problem was practically at my front door. After everything possible was tested and I was found to be “actually healthy”, I was FINALLY referred to the outpatient clinic in Datteln. There my parents and I had a long talk with doctors and psychologists and determined quite quickly that an inpatient stay was necessary. By some lucky circumstance I was fortunate enough not to have to wait a few months for a place on ward “5C” in the hospital, but was accepted into my room in the inpatient clinic five days after my appointment at the outpatient clinic.

How was my experience in the hospital? Well, it wasn’t always just peace, joy and cake, but where is it ever like that? Anyway, I must say that I had two super roommates (luckily my age), and we three sort of supported each other through the whole therapy program, which always gave me a lot of strength. We three were also good friends long after the end of our therapy, and it did me good to have someone who understood me completely. Besides, I became aware for the first time there that there are many others who have it much worse than me, and they were also on the way to getting better. Such things give you enormous hope and great strength.

But now to me, myself:

Finally my diagnosis was confirmed. FINALLY a diagnosis. No physical cause, but at least I could be sure that I wasn’t just imagining it all. Finally I could be helped. For me the most helpful thing was the discussions with the psychologist on the ward, who for one thing tried to get to the bottom of the cause of the headaches, but at the same time gave me methods and techniques with which to reduce the acute pain or even to stop it. Besides, I had biofeedback sessions several times a week in order to get to know my body so that I could learn “to relax”, dumb as it might sound. I was lucky enough to receive further biofeedback sessions after the three-week hospital stay, since I live in Datteln and could do it on an outpatient basis.

In general the program on the ward was very well geared to the individual patients, so that some did more sports, others more therapy, and so on. Very well suited to the individual needs, which I found very good. In the end everyone on the ward perceives their time there differently, but what I believe everyone has in common is that the stay provides hope, and I believe that many who are there are in the beginning as desperate as I was at the beginning of my stay.

One thing I learned in therapy and that I try to keep making use of as much as possible, is not to be ruled by my headaches. Burying yourself every day, lying down and sleeping is exactly the worst thing you can do. Staying active, going out and “putting the pain behind you” is the only thing that makes it better. Otherwise, the headaches will kill you. I know that in the beginning it’s easier said than done, but with the support of family and friends, it works. There were personal reasons with me, that probably do not apply to others, such as that I was bored at school and tended to be more often unhappy than happy. On top of that, I took EVERYTHING much too seriously, which took a heavy toll on my body and my psyche. For me there was only black or white, good or just awful. And that just shatters you.  After the hospital stay I was treated by a psychologist in Datteln for a while and got control of my “pigeonhole thinking”. Besides, I approach many things in a more relaxed way now and if necessary, just let things be. An important step towards inner “equilibrium”, and away from my headaches.

I wasn’t and am not completely free of headaches. I’ve come to terms with the fact that I will never be. But it’s good. Very good. People who get to know me now would never imagine this story if I didn’t calmly sit down and tell it.

I’m now 21 years old and in a few weeks I’ll wear the black gown to get my Bachelor’s degree from one of the best business universities in Germany. Meanwhile I got one of the best Abiturs of my class, lived six months in South Africa, camped in the African bush for four weeks and backpacked through nine countries of south east Asia for eight weeks. I don’t say all that to sound conceited or to make you envious, but because five years ago I wouldn’t have thought it possible! I know that it’s very difficult for you right now and that sometimes you’d like to simply put your head in the sand. But see what I would have missed. And it’ll be like that for you, too. Sometimes it still surprises me even today, how well I am now, but you simply must not give up hope. Keep looking ahead, that’s the most important thing. I’m crossing my fingers for you.

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