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Da Hege ble bedt om å skrive en engelskstil om temaet «å være annerledes», valgte hun å fortelle åpent og ærlig om sine utfordringer med Crohns sykdom: både om hvordan det kjennes på kroppen, på skolen og hvordan det påvirker vennskap. Vi har fått lov til å publisere den sterke teksten til Hege på engelsk. Vi håper denne teksten både kan nå ut til andre ungdommer som føler seg alene med sykdom og at andre kan bli inspirert av Hege til å sette ord på sine følelser og opplevelse
Tekst: Hege Ankarstrand
When I was 14 years old, I wasn’t diagnosed with cancer, but crohns disease. It is a chronic inflammatory bowel disease. You may not see it, but I can definitely feel it. You don’t understand it, but this what I know: I deal with it on a daily basis. You either think I’m lazy or you feel sorry for me, but I’m stronger than you’ll ever know. I fight every day. I don’t want your sympathy, but I just want to be treated with respect and make people understand what I’m struggling with and how I’m dealing with it.
When I was 12 years old, I didn’t have so many friends. Everyone grew apart, and I was left all by myself. My mom wanted me to make friends, and she wrote me into the football squad for girls at my age. I made a lot of new friends, and I liked playing football. For the first time in a very long time I felt like I belonged somewhere. I made friends with girls at my age with the same interests as me. High school was waiting for me to the fall, and I knew what was coming: grades, drama, boys and infatuation. I wasn’t worried at all, because I had a lot of friends who were going to the same new school as me. But I didn’t know that a tough time for me waited in 9th grade.
8th grade went well. Nothing else but the same old drama in classes. I knew I was special, because I didn’t care about alcohol, boys at the other schools, or to become an adult. My focus was in the present, not in the past or the future. School went well all the way to the summer between 8th and 9th grade. The summer of 2017, I quit football because I lost my energy to homework and school. My parents thought I was tired and exhausted of all of the teenagedrama between the girls in my class and they thought it was just a matter of time before I got my little “sparkle” back through the summer.
When 9th grade began I switched classes, and the pain in my back disappeared. I got my motivation back and everything went well until October one month after the beginning of school. The pain moved from my back to my hip, and the doctor diagnosed me with inflammation of the groin. It was okay, but I felt bad for my grade in gym. I didn’t want them to think I was lazy because the pain in my right hip. I was still exhausted, and we didn’t know why.
After the Christmas holiday the same year, the pain was back, but it moved to the stomach. We went to the doctor, but she thought it was just a bellyache. She sent us home, but the same night we went to the emergency room because the pain started to get worse. The emergency room decided to send us to the hospital where we stayed for six days. It wasn’t just a bellyache, and after ten doctors they figured out it was a constipation. But why did I get a constipation? I ate well and had a normal life with normal stress. We were sent home with a lot of stool sample glasses, and I think you know what we did with those sample glasses.
We did an MRI at the hospital, and one gastroscopy, one endoscopy in narcosis with several biopsies. And in the middle of April 2018, we got the diagnosis because all of the samples turned positive for crohns. My mom knew I had it because of my “laziness”, bellyache, the pain in all of the joints in the body.
Between my little visit in the hospital and the gastroscopy in early April, I cut almost all contact with my friends. I was tired and wanted to sleep all day. I slept for about 15 hours a day with some visits at school. And finally, some of the teachers at school understood I wasn’t able to manage stress, but still there are some teachers today that don’t understand me, and my disease.
Today, my worst obstacle in life is all of the unpredictability. If someone asks me to hang out on a Friday, and the day they asked me is a Wednesday I can’t promise anything. It is up to how I feel that day. Some days my head and stomach hurt. This gives me a limit for what I can do that day. My friends started hanging out without me, and it hurts, but because of my illness I can’t take the risk of getting ill.
I never know when I’ll have a good day, and at any moment my symptoms can arrive. That makes it hard for me to plan things or even have a regular schedule. If I cancel plans with you, please don’t take it personally. I’m not shady, I’m sick. Crohns disease is more than just bowel conditions. It can also cause anaemia, swollen joints, osteoporosis, eye-, skin- and liver problems and the worst: overwhelming fatigue. It is important to remember that Crohns disease is a lifelong condition, that can also have a serious impact on a person’s psychological health. In the present it is no such thing as a cure for the illness. For now I just have to live with it, and make it a part of my life, not an obstacle in my life.
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Debattinnlegg skrevet av Mads Johansson, generalsekretær i Mage-tarmforbundet I dag den 19. novem
Les merTekst: Mads Johansson, generalsekretær i Mage-tarmforbundet. Bilde: Shutterstock / Bilde Johan
Les merInnlegget har stått på trykk i Dagsavisen Mads Johansson, generalsekretær i LMF Kanskje så man
Les merSterkere sammen! Vi ønsker å oppfordre alle som leser dette og som ønsker å støtte Mage-tarmforbundet og vårt arbeid til å melde seg inn i vår organisasjon. Jo flere vi er, jo sterkere stemme får vi!
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