This article is by Vasiliki-Rafaela Vakouftsi from Greece.
Summary
I have recently written a diary book describing my journey with Crohn's disease.
You can read the whole book in Greek here.
The following are some parts of the book in English. Hope you like it!
Monday, January 14, 2013
Another night of unbearable pain, I did not close my eyes, when I tried to got up I fainted from the pain...
Saturday, January 19, 2013
I have no energy to do anything today.
Sunday, January 20, 2013
I am so tired and in so much pain that I cannot stop crying.
Wednesday, January 23, 2013
Another night with pain and diarrhea ...
Somewhere here I begin to realize that something is wrong.
I still remember the confusion and mixed feelings of that period. The period before diagnosis.
In all my life, I felt ashamed and embarrassed. I did not know what was happening to me, but I was sure that something serious was happening.
The “explosion”
When I look back at my life, the life before the diagnosis, I experience a strange feeling, like the one you feel for a wonderful movie for which you do not remember the protagonist. I remember specific moments, such as the endless hours I spent in doctors and hospitals trying to find what was happening to me. Many of these moments I felt alone, I felt that no one understood me.
I had no idea what was going on and how the disease - which at the time I did not yet know existed - had silently found an environment to develop. In fact, I had not even heard of Crohn's Disease. It may take some time to come to terms with your new life and perhaps at first mourn your old life. There are some stages that it is normal to experience until one reaches acceptance. Denial, isolation, anger ... Sometimes it can all be a very lonely journey.
The journey to diagnosis
My diagnosis was a long and devastating process. But even this is not uncommon, it happens many times. After I turned to several doctors without finding the coveted solution, a doctor was found who finally understood me. A little later I was diagnosed with Crohn's Disease.
The moment of diagnosis can be a shocking or even scary moment for all parties involved and not just for the patient.
The adaptation
I have now achieved a fairly good level of acceptance of the disease. I felt I had to find a way to make my life according to the new data. There were times when I fell and maybe I will fall again, but I accepted this fall as a part of my life. But I never forgot that there is a hope. It is very important to maintain a "normalcy" when living with a chronic illness.
The embarrassment and the doctor
Perhaps one of the most embarrassing things you will encounter on your journey with the disease is to open up to your doctor and reveal some more "special" things about you. In most cases, the fear and anxiety of talking to your doctor about all of this tends to diminish with time and the relationship that develops between the patient and the doctor.
The flashback
I had never heard of Crohn's Disease, I may have heard of it, but so far. I did not even know anyone suffering from it. Why should I assume that I suffer from it? Looking back now, well after my diagnosis, maybe if I had put the pieces in the puzzle earlier, my course would have been quite different.
The relationship with the doctor
When you live with a chronic illness, you spend a lot of time in the hospital or with your doctor. For this reason, we often end up choosing a doctor who inspires trust and respect in us.
Your doctor should treat you patiently and respectfully, keeping your medical confidential and giving you as much information as possible about your condition. As a patient, however, you also have obligations to him, such as being honest about your symptoms and following the instructions given to you faithfully.
The doctor-patient relationship is a mutually beneficial relationship that develops over time. It is especially important to know that your doctor is willing to listen to you and even more important that he will understand you. An indifferent doctor will face an unhappy and anxious patient.
The label
Every Crohn's disease patient is unique and different. The experiences of two patients are never identical. There are of course similarities in all cases, but each has its own unique course.
The surroundings
I often try to remind myself that although I am sick, I am not the only person affected by my illness. It can be very difficult at first to take distance from what is happening to you and see how and how much your illness has affected those around you.
Philosopher ...
No one can deny that Crohn’s plays an important role in your mind as well as your digestive system. My biggest challenge in my career so far is trying to maintain a good balance in both my physical and mental health.
Often the reminder and the embarrassing realization that "I will not get well" overwhelms me, as I have almost adapted to my illness, these days fortunately become more and more rare.
Crohn's disease is a constant challenge that you cannot overcome, just control. I now know the limitations of my body and I have accepted them all. I know I'll never be 'perfect', whatever that means, but it 's me and that' s all I have.
Accepting your body that changes and even more so the changes that the disease brings to your life, is easy in theory, but in practice it is a little more difficult.
End...
Having Crohn's Disease has radically changed my life in many ways. Not necessarily for the worse, I can add. It was, is and will be a constant mental and physical challenge. It forced me to reconsider what is important to me and who I can count on. He showed me what really matters in life: health, love and happiness.
I have learned thousands of lessons and I am sure that I will continue to learn things along the way. It made me realize how many things I can do, as long as I have set goals. It surprised me for how much I can endure and how much I have already endured.