About Me

I am from Hungary, and I have lived with chronic pain for around thirty years. It does not come and go in the way many people imagine. It is always present.

One side of my body is always affected. There is a sharp vertical boundary down the middle, as if someone had drawn it with a ruler. Which side is affected seems mostly random, almost like the result of a coin toss. It can switch after sleep, but it does not change during the day.

I find the nature of the pain difficult to describe. I cannot compare it to anything else. On the affected side, it extends to my bones, muscles, skin, and tendons. I feel a constant urge to press, stretch, or tap any part of the side that hurts. I do not act on this urge. I do not want to harm myself, and it does not help. Pressing the area feels indescribably pleasant at first, but the pain becomes stronger afterward. It is as if it "demands" even more.

In recent years, I have occasionally had pain-free days. There are not many, and they follow no pattern, or at least none that I have found. I may have a few such days every couple of months.

The constant pain occupies my thoughts. There is not a minute when it is not there. The most honest response would be to scream all the time.

At the same time, my cognitive abilities decline. My thinking slows down, and I speak haltingly and with effort because I struggle to find the words.

This is not a medical site and not a diagnosis. I am not here to tell you what is wrong with you or what you should do if you are in a similar situation. I only describe what I experience and what I go through.

I can only endure the pain by focusing on the positive parts of my life, making plans, and continuing to take care of myself. Without plans and a positive outlook, I could easily give up and lose control. Even so, it is very difficult. Some days are a little easier, while others are much harder.

I no longer expect doctors to find a solution. I see acceptance and different ways of coping as opportunities to make my life somewhat more manageable. I do not know whether things will ever change, but I will not give up.

I know that many of you live with similar invisible pain. Your lives are filled with challenges that other people do not know or understand.

I cannot know exactly what you go through day after day. Your pain may be less or more intense, or different in nature. Still, I know what the suffering caused by invisible pain feels like. Through this blog, I want all of you to know that you are not alone.

I wish you strength and perseverance in your struggle.