Ania Świrk remembers the last normal meal she ate: a chicken breast stuffed with dried tomatoes, with mozzarella and rice. That was 2 years ago and she hasn’t eaten or drunk anything since.
Ania suffers from gastrointestinal motility disorders and malabsorption disorders which means she can not eat or drink anything. “Everything really hurts. Ordinary water hurts, but also my own saliva and digestive juices. I can not take a headache tablet for example. I am excluded from everything”.
What, even water?
“For example, if I took a sip of water now, my stomach would grow like a woman in the ninth month of pregnancy. Or I would get the worst possible version of diarrhea. The first is unimaginable abdominal pain, tearing chest, pouring, heartburn, oesophagitis, the second – extreme dehydration”.
For more than two years, Ania has been feeding herself only by way of a parenteral route in the middle of her chest. She basically has a hole. Through this hole, a cable is connected to the main vein near to the heart which provides her with liquid nutrition, which complements all deficiencies and nutrients. In her case, the digestive system is completely neglected.
This also means that Ania is connected to a 3kg bag for 19 hours a day. At home, it is accompanied by a stand on wheels, which lets her walk around the house. For outside she has a backpack, to which she puts in a feeding pump. She only has about 5 hours a day without any wiring.
‘The stand is called Leszek, and the backpack Wiesiek, my two boys. This is what it looks like every day”.
Inside her drawers, you will find normal girl things like neatly arranged lipsticks and a mirror but unlike most girls, you will also find syringes with physiological saline, swabs, alcohol for decontamination … “The bag has to be changed every
How did it all start?
The beginning of the disease did not seem to be dramatic at all. ” It began with the sinuses. I underwent two surgical procedures and had a huge dose of steroids and antibiotics ” says Ania.
“The doctors examined me for everything when it did not work, including Lyme disease and multiple sclerosis. Nothing indicated a specific cause. To this day, Polish doctors do not know what it is. They also have no treatment plan for me. Because parenteral nutrition is not a treatment, it is to keep me alive but will also shorten my life because it reduces immunity and efficiency of the body.
According to Ania, the doctors – with small, glorious exceptions – always made her out to be a crazy woman. “Each visit ended with a suggestion or simply saying that I invented the illness myself. They told me I was in a deep depression. They said ‘You are doing it yourself’. One physician even told me to go and eat a pork chop!”
Ania listened, tried to live normally but the disease continued to develop. ” At some point, my digestive system just stopped working. It was something unimaginable. When I drank water, together with my stomach acid it would burn my esophagus. Pain that can not be described. I tried to eat, but I did not digest, nothing was absorbed, so I started losing weight very quickly. At the worst point in the hospital, I weighed 35 kg. I have only one picture from this period. Then the doctors began to convince me of anorexia”.
Are you angry?
I am angry today for the approach of most doctors I encountered. Its a disease people do not recognize because it cannot be seen. A pretty girl cannot be sick, right?
The history of Anne’s disease – extremely rare and still not completely diagnosed – is certainly unusual. But the strength of her character is even more unusual. At a time when everyone wants to be special, but hardly anyone has the courage to go ahead, she is not afraid to speak politically incorrect or admit her own weaknesses. And that’s her strength. “People say that the limitations are only in the head. It’s not true. If that were the case, I could throw the pump into a corner, take the cable out and go to the mountains. Unfortunately, it does not work like that”.
“The truth is that when someone gets seriously ill you don’t really see it. You do not see my worst moments, you see the best. I write about bad ones, but it still does not reflect the truth about this disease, which has taken over every bit of my life. But I have learned to enjoy the smallest joys. Otherwise, I would simply go crazy. I would only think about this illness”.
Do you miss food or have you got used to it?
“Apple pie and lasagna – this is what I miss the most. And ice cream of course. People think that you can forget about it, and not think about food anymore. It’s not like that. It’s missing all the time, every minute of the day!”.
So what for the future
I would like to stabilize my illness. Enough to let me plan something, make an appointment with someone normally and be more social. To be able to continue to do what I do: run a blog, drive a car, rummage with my brother under the hood, play with fashion and make-up, make backpacks. Have as many good days as possible. At the moment, diagnostics and treatment in Poland
So what is the prognosis?
There are opportunities abroad, where I could at least diagnose myself properly because my disease is unfortunately very rare and we do not know the main reason. There is a plan to take stem cell therapy in Mexico. This gives me a chance that I could – if not even completely recover – improve my condition to a large extent. My friend painted such a great picture on which I fly a balloon over Mexico. And I’m almost there.
Since this interview, Ania has managed to gather the 250,000 PLN needed to get the treatment she desperately needs thanks to thousands of donations she has been receiving. We wish her all the luck in the search for some sort of normality. Unfortunately, the Polish health service
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