Case 3: Huliyah

Personal data

Name: Huliyah

Age:   21 years

Situation at home

When I was four years old my parents divorced. Since that time I live at my mothers’ who is a schoolteacher. There is no contact with my father. I have no brothers or sisters.

I want to live in lodgings. If I move my mother will get some more room to organise her own life.

History

In my preliminary I got high marks for many subjects. Learning and studying has always been easy for me.

Four years ago I got ill. I got fever as well as continuing diarrhoea and severe bellyache. I couldn’t keep my food and drink inside and I was always very tired. It appeared to be Crohn’s disease. I have been in a hospital for a long time and I got only the food for astronauts in order to get rest for my intestines.

I have got several operations and in the last few years sometimes it was going better and sometimes worse again. Just when the situation seemed to improve a bit I went back to my physician with new complaints, every time new disappointments. I had my work to overcome all this. The worst was the fear to loose my study. After all I am too young ‘to sit behind the geraniums’.

Complaints / restrictions

The complaints come and go unpredictably. ‘Crohn’ can be quiet for a long period but suddenly it can strike again. You cannot control this. So always I carry a change of linen.

From time to time I can study, though I always have to be careful with my energy. Sometimes I only can study whole days sometimes only for a few hours and after that I need to rest again.

The unexpected aspects of the disease are difficult to understand for my friends as well as for other people. They often say I can call them if it is going badly. But mainly these are the moments I don’t want to see anybody because I am ashamed. I prefer to get understanding if I have to cancel an appointment because of sudden pain in my belly.

It happens that the pain comes when I wait for the bus. In such cases I have to go home again quickly in order to prevent worse situations. So sometimes I miss parts of lessons or even whole lessons.

I don’t like to discuss this with anybody. I prefer other subjects to talk about. Some people call me pitiful, others say: “how strong of her to study!” I hate all this.

Daily life

In my first better period after the start of the disease I thought I can study for three days a week and in the weekends I can go out with my friends. But that turned out to be wrong. After three days of work and one evening going out I needed a whole week to recover again. So now I study part time and I nearly don’t go out any more. (Sometimes I feel more like I’m 75 than 21.)

Now I have found an own rhythm of working and resting. My fatigue can be helped with regular exercise, a healthy diet and enough sleep. And eating small meals frequently instead of big meals helps me with my low appetite.

The main problem stays the unpredictability of the complaints, especially when I have to go home again because of suddenly upcoming problems. It always troubles me to make an appointment. After all I have to cancel it if anything goes wrong. How to deal with this?

Perspective

On this moment it isn’t possible to recover from Crohn’s disease. But I like to use my brains. I hope to obtain a certificate in higher education and to achieve a profession in which I mainly can work part-time and for example at home or in my own tempo / time.