Hello, my name is Esther and I have Crohn's disease. - I could have said that if I had ever gone to a Crohn's Crohns aid group. But I'm not. To be honest, I have to be somewhat grateful for my illness. But I'll start from the beginning ...
- the initial situation
- The diagnosis
- Liquid, mushy or shaped?
- The worst part of the disease?
- The really important part of the story
- retrospective
- today
In literary studies it is said that in literary texts every detail makes sense - inevitably, because very few people like to read stories that make no sense and authors could also assume that they do not just write something. So if at the beginning of "Brave New World" in extenso a nail would be written on the wall, it is only for the reason that the protagonist hangs from it at the end. Here comes my nail: On 08 January 2010, my best friend died of cancer - what that has to do with my "savior" called Crohn's disease, I explain later.
the initial situation
After the death of my girlfriend, I did my best to harm myself. While my inner life consisted only of sadness, anger, fear and self-hatred, I outwardly played my life program, studied and did what one does as a functioning person. All people who wanted to help me, I pushed away. I did not want to be hugged and I did not want to talk - nobody could understand me anyway - I wanted to continue to pity myself and punish myself for not getting cancer and dying. I would never have killed myself, but I wished myself death.
This article is part of #wunderbarECHT, an action for more authenticity on the net. Be there!
The diagnosis
Ultimately, I can not say how long I have suffered from extreme iron deficiency and diarrhea before I started to realize that something was really wrong. Since it gave me a sense of contentment and calm when I felt sick, every SOS of my body was for me only a result of my strictly calculated kamikaze life and a welcome, official sign that I was not feeling well - because that was the ultimate goal. It went on until it was literally gone: One evening I could not get up from the sofa, I could no longer bend my knees, my ankles were billowing thick on both sides and the rest of my legs covered with strange blue-red bumps ... The daring theory of a nurse in the emergency room - "I think your leggings are too tight" - turned out to be wrong: Many detours and many different doctors (we speak here over a period of several years) finally found a hematologist that I suffer from autoimmune diseases, more specifically sarcoidosis and Crohn's disease.
Liquid, mushy or shaped?
After the diagnosis, I ended up with a lot of luck (and also about some detours) in a medical study at the Hannover Medical School. For me it all somehow felt like a movie: Officially "hard" to be ill was what I subconsciously always wanted to do the years before. Be it out of guilt or out of the desire to somehow be close or closer to my best friend through this experience. That sounds somehow morbid-romantic. In reality it was anything but that: Between gastrointestinal reflections and iron infusions, I had to be a young woman (honestly even 25 years old, more like a girl) with far too young doctors who, for some reason, almost all looked like Hollywood stars constantly talking about how often I go to the bathroom every day and if my bowel movements are fluid, pulpy or shaped. The answer "No idea, I did not dive!", I thought every time, but never pronounced. I also found it really great to have to tell EVERYONE of the Doc Hollywoods (high on the doctors rotation system at the MHH) that I have no boyfriend, never had sex, but would of course use double prevention if it ever happened. "Yes, I know that the pill can not work because of the Crohn ..." (This with the double contraception is related to the drug that I have been injected for five years now - who permanently has substances in the body that destroy the immune system, may not pregnant in any case.) Some may now think: "These are her problems when she is just seriously ill?!" All I can say is: Yes! Because even if I'm a Crohn's disease patient, I'm still a human being - a point that doctors often overlook when they diagnose "seriously ill" and expect their entire life to be directed only to Mr. Crohn.
The worst part of the disease?
Crohn's disease is not the same as Crohn's disease. And that I can call this disease here as my savior and write casually about my experiences, is also related to the fact that I am doing very well today and the drugs have worked well. Crohn's disease comes in bouts: Symptoms are not just the persistent diarrhea and (really racing) abdominal pain, extreme joint pain and erythema nodosum (the strange blue-red bumps on the legs) that showed up in my body. Other sufferers suffer from fistulas and inflammation of the eyes, or may even have to operate and have parts of the intestines removed. Once you need an artificial bowel, it will probably always be one of my biggest nightmares.
For me, during the time I was acutely ill, the worst thing was that I had no strength and no energy left - for nothing. My body, which seemed to me to be indestructible all my life (several horse falls and daily rounds with a HB value of 8 proved that again and again), was at once just that: destroyed, broken and weak - but exactly at this Point I had to come to understand.
The really important part of the story
So far, I've left out the really important part of this story: It's the moment when Crohn's disease made my body so sick that I realized I wanted to live. And not only that: suddenly I just wanted one thing: to be healthy. In my case, that meant stopping me, but fighting for me.
retrospective
Looking back, I have spun a story out of my life and believe I have recognized a lot. I know today that my self-destructive anger was caused by misguided guilt, but I do not blame it. It was my reaction to the fact that I could do nothing when my best friend suffered before my eyes and finally fell apart. However, I'm sure that if she somehow saw me or was with me somehow, she cursed and raved about how I could be so stupid. The cause of Crohn's disease is still not clear. For my part, I'm sure I got sick because all the oppressed feelings, emotional pain and self-hatred were too much for my not-indestructible body.
today
Today I am still a syringe away from an outlet attempt. Since my last colonoscopy, I am officially in remission and my body is so healthy that I can sell all drugs. Am I scared to get a boost and get acutely ill again? In any case - and that's a good thing. But even if Crohn's disease crops up again: today I'm happy, today - and more importantly - I want to fight for myself and today I can take help from the many people who are always there for me when I'm not anymore can - brave new world ...
Continue reading:
Crohn's disease: From symptoms to nutrition - you need to know about the disease
#WonderbarECHT - what is it?
"My phobia does not understand another woman"
Column: "I only understand Tinder"
