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.
EDS AND TEENAGE POSTURE
In our teenage years, we are searching for a place in society, trying to fit in, looking for a partner and laying the foundation for our adult life. Physically, a lot is happening too, our bones grow faster than the rest of our body, and we become lanky teenagers with a body that often does not yet match our mental development. For someone with EDS, this is next level lanky. Like many people with EDS, I could do things with my body to shock my classmates. For example, I could twist my arm so far behind my back that it seemed as if my shoulder blade could pop out through my skin at any moment. I sat in the strangest positions, for example, with my legs double crossed.
When I was 10, we had a medical check-up at school. My spine was so bend that scoliosis was suspected. A doctor had to come in to refute this. It was not scoliosis, but as I now know, my muscle tone was simply too low to keep my posture straight all day.
I was often told by adults to straighten my back, shoulders forward and walk like a “man”. I took this seriously, because of course I wanted to appear strong, like a “man”, and indeed, even when muscle tension is very low, as with EDS, you can consciously tense your muscles and hold them tight in lower parts of your consciousness. This gave and still gives a somewhat unnatural and forced movement. Especially when I relax or do a quiet activity, while when running or doing sports the muscles are automatically tensed, to do the work and this looks less stiff. When completely relaxed, the body collapses like a pudding and I have to remember to tense the muscles.
Of course this is incredibly tiring, but a young body could handle it. However, it was, and increasingly became, a balancing act to distribute the energy, not to overload the muscles and still keep moving.
EDS AND STUMBLING
I had to learn to keep the muscle tension in my body strong in a deeper layer of my consciousness. Sometimes I fell spontaneously, teenagers are clumsy and can trip over their own feet, but the way I fell was frightening to those who saw it. At school I therefore once had to report to the principal and convince him that it was not epilepsy. At the time I did not know what I was suffering from, but I did know that it came from my muscles.
Standing still was difficult as a teenager. Mentally I could tense my muscles but holding on to it was hard. I quickly came close to fainting, felt the blood drain from my head and had to sit down.
BLADDER ISSUES
Biggest impact that made me different from others were my bladder issues. I regularly wet the bed. As a child people assumed that ‘it will get better by age’ but as a teenager I knew that something was wrong. Bedwetting was sometimes discussed in teenage magazines and that at least gave me the confirmation that I was not alone with this problem. My home situation was difficult and I could not, and did not want to talk about it. Instead I often slept with towels in my bed and in my underwear.
At one point I noticed a pattern when I wet the bed. It mainly occurred when I was relaxed. Mentally relaxed, happy, and in balance that I had no control over my bladder at night. By realizing this, around the age of 16, 17, wet the bedwetting less often and I could control my bladder in my subconscious. As I grew older, I was no longer that child who went to bed with a carefree, empty head and relaxed so much that the body slackened and the bladder function, which is so basic, was no longer under control.
As my world grew bigger, however, I developed other bladder complaints. The urge to urinate came suddenly, very quickly, very painfully and sometimes, unbearably. The pain, and the discomfort of being paralyzed by the pressure on my bladder, was so severe that I avoided activities. I did not go on school trips and avoided being away from home for long periods of time, or rather, I knew that a toilet was nearby. Again, the trigger was situations of relaxation, of rest. Now I know that this has a name: Overactive Bladder, but in our family we called it a small bladder, a condition that my mother and her sisters also seemed to have.
MEDICAL CHECK-UP AND INGUINAL HERNIA
At secondary school there was also a medical check-up. It was checked whether development and growth were proceeding normally. Again, my posture and especially my back were a point of attention. Again, a bend growth of my spine was suspected, and the nurse called in a doctor. In retrospect, all the signs point to EDS, but apparently this was not yet so well known in the late 80s. I was advised to carry my heavy schoolbag in a different way. The doctors saw that my posture was not caused by unnatural development, but that this might have had another cause was not recognized. An extensive check-up followed, during which an inguinal hernia was also found.
EDS, INGUINAL HERNIA AND VARICOLESIS
After the medical examination I had surgery for my inguinal hernia. However, it did not help for long, and barely 2 years later it happened again. After the operation, however, I was told that it was not only an inguinal hernia but also a varicose vein to a testicle. Later my urologist noticed that I have this on both sides. This is also a clear indication of EDS. That this was not immediately linked to EDS is understandable, but that no one did further research into the cause of inguinal hernias and varicocele at such a young age, does now surprise me.
Bladder issues, bedwetting, and incontinence have had a major impact on my life. The despair caused by shame and lack of understanding of my own body has shaped who I am. My self-image has been negatively affected, and I often wonder what kind of person I would have become if I hadn’t experienced these problems growing up. Everyone is different, of course, but if a child today grows up with these problems, I hope they know and realize they are not to blame. I hope there is more understanding among parents, teachers, peers, and doctors about this issue and how much it can burden a child and adolescent. A few incidents have always stuck with me, which I describe here to illustrate their impact and to show the impact bedwetting and incontinence can have on a person. I hope this will be helpful to someone struggling with this today.
Living with Ehlers Danlos Syndrome 