Please note, this is my personal experience of living with Ehlers Danlos Syndrome, the treatments and path to diagnosis and should therefore not be taken as medical advice. I am aware that some complaints are only indirect EDS symptoms but these also contribute to the overall picture and my experience with the condition, EDS.
Quotes and links are freely available information from the internet and not verified. These, and my experiences, are not intended as an alternative to medical advice.
The generation growing up in the 70s and early 80s, the so-called Generation X, was called the ‘nothing generation’ in our time. We did not go protesting for a better world like the generation before us, and we did not have the high-flown ambition of our post-war parents who had worked hard to rebuild the country. Instead, we listened to lollypop music and the future seemed aimless. The economy in the region where I grew up was in disarray, unemployment was high and the threat of an inevitable nuclear war was omnipresent.
Like many others, I grew up with a lot of freedom. We could roam through fields and forests, build tree houses and explore the wide area by bike. I look back on it with satisfaction, although there were already signs that my body behaved differently than others.
Now I know it was tension pain, which, like with so many children, manifested itself in stomach pain. This was so severe at times that I often went to the GP with my mother. Explaining exactly what you feel is very difficult as a child and the GP could not make much of it. I was referred to the hospital to check whether it was diabetes. When this was ruled out, it was clear that nothing was wrong with me, and the golden tip was ‘just don’t think about it’.
This was the beginning of making my body mentally pain-free. In many ways, I was the opposite of someone with ADHD, I was shy, introverted and my head was often empty. I was forgetful and had difficulty processing what was expected of me, also physically. I wet my pants for a very long time, and kept wetting the bed at night. There was something wrong with my body, but that would only become clear much later.
Yes, I was hypermobile and could bend and extend my limbs more than others, but that was just a circus act, one that I could use to make others laugh or shock them. The stumbling was just an awkwardness that suited my personality, which, although I didn’t realize it at the time, was characterized by an unstable body.
Living with Ehlers Danlos Syndrome 