„I Did not Know What Was Going On”. About Living with a Handicapped Sister.

01.02.2008

Kathrin Hornung talks about
her experiences © Hornung

REHACARE.de: Mrs. Hornung, as a child you often had the feeling to run alongside. Why?
Kathrin Hornung: I did not know what was going on, why she has been treated differently and why she had to go to the doctor that often. In my opinion she was normal. Especially paediatricians gave her all their attention. Whenever she got a handful fruit gums as praise for being so brave, I only got one. I was asking myself, of course, what I did wrong and if I acted amiss. I felt lonely.

REHACARE.de: Did you talk about that with your parents?
Kathrin Hornung: We have only been talking about this matter for five years now. Today, I know that my parents were scared that my sister would not get very old. But they did not say this to me. Now I know that my mother did so in order to protect me. At the time back then, the subject sibling was not an issue in society. Nobody realized that I was having problems. I tried to act as inconspicuously as possible since I wanted to relieve my parents.

REHACARE.de: What caused the talks with your parents after so many years?
Kathrin Hornung: The reason was a therapy which I went to since I suffered from anxiety attacks. Already as a child, I had always suspected something bad when I became sick. I finally spent two months in a clinic where I had to face up daily to myself and my situation. I found out that I have often been lonely because I was different, too. But at the clinic I was able to confront myself with this issue.

REHACARE.de: In what way were you different?
Kathrin Hornung: I was not like other peers, although I wanted to be like them especially as a teenager. Whenever they talked big like “look, he is disabled”, I thought it was wrong but I did not say anything because I also wanted to be just cool. Afterwards there were often situations in which I stood up for somebody else. A teacher once used the term special school as a cussword. I told him that my sister was attending such a school and that she was not stupid at all, that he should be happy that his own child did not have to rely on such an institution. This made him shut up.

REHACARE.de: How was your relationship to your sister?
Kathrin Hornung: It varied. As children we had a good one. I always defended her. This changed when becoming a teenager. People look at you a lot when you are with a handicapped sister. This was too much for me for a while for which reason I backed out. When I was annoyed with her, I did not show it. I did not want to affront her as well since she was already handicapped. I thus arranged it with myself. As a result, I became unapproachable to her. Sometimes I even left the room in order of not getting in touch with her. I could not have conversations with her.

REHACARE.de: And today?
Kathrin Hornung: Since I moved out from home, our relationship improved and I am able to deal with her easier. I do not blame her for anything and do not respond so aggressive to her personality. I realized that she is a very friendly person who has to cut back a lot. She has a great sense of humor and seeks my company. And, above all, I have my own life and know what is good for me.

REHACARE.de: Having a handicapped sister has put a lot of pressure on you and now you stand up for other siblings of handicapped children.
Kathrin Hornung: I want to build something up with my homepage “Geschwister behinderter Menschen” (siblings of disabled people) and a group which I launched. At home in Hamburg, there are no offers for siblings. And for me it would have certainly been useful to talk with other healthy siblings.

REHACARE.de: Do you have any advice for people concerned?
Kathrin Hornung: Parents should tell their children what happens. Children can bear a lot. The only thing they cannot bear is when they do not know what is going on. For grown-up siblings it sometimes suffices when they talk to good friends or even to their parents about their experiences. Otherwise the internet is right now the best possibility to exchange experience with other people concerned.

REHACARE.de

- German discussion forum for siblings of disabled persons: www.geschwister-behinderter-menschen.de