The story of Iris
I’m 22, and 7 years ago, I have been diagnosed with eosinophilic esophagitis. For a while, I felt better thanks to medicines, but the symptoms are always coming back, and are more present than before. Most people around me don’t know that I have a rare disease, or at least they don’t get how much it affects my life. They don’t know because I don’t look sick. People see me dressing up, studying, working, dancing, going out, having ambition… But what they don’t see is that my everyday life is not exactly the same as healthy people.
I don’t look sick, but I experience esophagus pain. It’s a pain difficult to explain because it’s not very usual to feel that in your esophagus. I also experience weird sensation in my esophagus, new symptoms that I don’t know how to explain because there’re just so unusual and weird. Having those symptoms is disturbing, exhausting and it sometimes makes me lose focus.
I don’t look sick, but I never know what’s going to happen the next day. Some days I feel like nothing can stop me, and other days I wake up and feel like the disease already took all my energy. Any time I can suddenly have some symptoms appearing, or disappear. You never know when the ups and downs are going to come.
I don’t look sick, but I have to think carefully about every single food I’m eating every day to avoid increasing my symptoms. I have some trigger food that worsens my symptoms: for me, the bigger ones are gluten, milk, and eggs. I also don’t drink coffee and alcohol because it causes me heartburn, and I can’t eat too much greasy food or I’ll feel terrible. Because of this special diet, I need to read every label at the store, plan and prepare every meal carefully, restrict myself from cheating. There’s no room for improvisation with such a diet.
I don’t look sick, but I regularly see doctors to try to figure out how to get better. I visit different doctors, try different treatments, have some side effects of the medicines. Sometimes it helps me, but most of the time it is not very successful. So, I just have to figure out things by myself and learn to be my own doctor.
I fight every day to accept that I have a chronic disease and that there is no cure for it. I don’t look sick, but I live with eosinophilic esophagitis.