Nervous, clammy hands, and shaky. So felt the 19-year-old Emma Strand Mikkelsen, when she as a 14-year-old would tell you about their illness.

Emma, who lives in Hammerfest, was born with the disease tethered spinal cord, that is to say a tumor in the spine. Eventually as she grew she got ailments with the intestines, the bladder, the feet and pain in the back.

at the age of 14, she went through her third back surgery. Things then became a little better, but only for a small period of time.

Not long after, she got major problems.

But then came the problems with that I don’t got to pee, so I had to teach myself to use engangskateter to get to empty your bladder.

– Gradually came the problems with the intestines also. I had a pain in my stomach and was blocked all the time. I couldn’t eat what I wanted, then was my stomach just got worse.

the Catheter Emma uses to get to pee is not larger than a ballpoint pen. Nevertheless, she was terrified that someone would find one in the garbage at school.

Photo: Private Destroyed bowel

As a young it wasn’t easy to have problems to go to the bathroom, ” says Emma.

In 2017, she received the offer of an operation to get blindtarmstomi, or expounded appendix. It would have ensured that she could wash the large intestine, so that she could avoid magemserter and avføringsproblemer

But for a teenager that would not be different, it was difficult to accept.

Since I had been operated upon three times from before in the back, and it may sound stupid, I didn’t want more scars. I felt that I could hide it on the back pretty well, but I would not that anyone would see that I had scar and ask what it was.

Thus, the next two years, characterised by fear, shame, stress that someone would find out what really bothered her.

I would not tell someone that my gut was destroyed.

” It was very heavy. There were several times I could not be with on things. On birthdays, for each of the party, at events. I was often away from school because I was bad in the stomach.

Emma spent a lot of time to find someone who was like her. It was what she missed. She felt no one was like her, and that she was alone.

I would not tell someone that my gut was destroyed.

Emma Strand Mikkelsen

An easier life

In 2019 changed everything. She looked at an interview with an actor who had received a kidney transplant and thus had a scar. It was only when Emma found out that it was not dangerous if she had an extra one yourself.

– I remember that she told at the end of the interview that she had never cared about the scars their. And it had no other rather. And then I was like: “why in the world do I care?”.

Emma is no longer afraid to show what the disease has done with her body. – It feels like a relief to have come so far with it, ” she says.

Photo: Private

Thus did Emma finally accept the operation. An operation that would make life a lot easier. Suddenly, she managed to tell more than his nearest about the disease.

it took me two years to say yes to a surgery that would make my life better, I think is pretty sick.

I very much want to be the person that I’m looking for.

Emma Strand Mikkelsen

– It is well the last year I have begun to tell about it, and not only to my loved ones, ” says Emma.

Photo: Private More openness

In a Facebook-post open 19-year-old about to live with the disease. Now it is out there, completely open and completely honest.

I remember how actively I looked for blindtarmstomi, or people who had something wrong with the intestine. And, not least, someone who had the same disease as me

– I very much want to be the person that I was looking for, when I first went through this. I feel like that parents can show their children and say “see, she is like you”, and that they should not be ashamed of it.

the Scar she was afraid that people would see are not bigger than a centimeter.

Photo: Private

And the response, it has been overwhelming. At the time of writing have post over 1000 likerklikk and 150 comments, and shares.

There have been messages from people I know and people I don’t know. There are very many who have said that they also have something wrong with the intestine. It is very common, but it is so strange because there is no one who talks about it and then it is easy to feel that one is the only one.

She has a clear advice to others who may feel the same:

– It helps to talk about it.

I have been unlucky with an annoying illness, but I have been extremely lucky with all the help I have received, ” says 19-year-old.

Photo: Private