Bedwetting remained a problem growing up. My home life was difficult, and I was on my own, believing I could and should solve this myself. When I should have been toilet trained long ago, and my mother was often angry with me for wetting the bed again, I looked for solutions myself. Stopping drinking and trying to pee before bed were, of course, the first measures my parents had already taken. Threatening with diapers was also used, but since the belief was that preventative diaper wearing would influence the mind to avoid bedwetting, these were not followed through. This way of thinking has always stuck with me, from a young age, and would have a profound impact on me later.
Of course, I was happy not to have to wear a diaper at night; I was and wanted to be just like any other child. Besides, I didn’t wet the bed that often, and it was often a nuisance. I wanted it to stop, but I especially didn’t want to be a burden to my mother, who constantly had to change my sheets. So I secretly grabbed a towel from the bathroom to sleep on. It helped, of course, but my pajamas still got wet, so I had a new plan. I folded the towel and tucked it into my underwear. This way, my bed and pajamas stayed dry, and although a drop still occasionally ended up on my underwear and bed, it was a huge improvement. For my family, I, too, at age 8 or 9, finally stopped wetting the bed.
Meanwhile, I washed the towels and let them dry in a corner of the basement before putting them in the laundry. I also did this with my pajamas or mattress protectors if there was ever a larger wet spot. But it was frustrating that I had no idea how to solve this. If wearing diapers could unconsciously lead to bedwetting, surely I should be able to consciously stop it? One of the strange thoughts I had at the time was that I would sleep with my hand on my crotch. Assuming that if the actual peeing didn’t wake me up, I would wake up when I felt the wetness on my hand.In a way, it worked, though not in the way I’d imagined. When I consciously went to sleep thinking I wouldn’t wet the bed, it usually didn’t happen. Now I know that going to sleep with a certain mental tension also caused my body to tense up, which prevented me from wetting the bed, and that it had nothing to do with my hand-brain coordination. But bedwetting only occurred when I was relaxed and carefree. It wasn’t until I was 13 or 14 that I realized this.
Meanwhile, I never slept over at friends’ houses. I only occasionally stayed overnight at my cousins’ houses, and I always made sure I had a towel in my underwear. But because I was aware of the dangers of bedwetting, this almost never happened. On vacation, it could happen again, although I was very aware of the danger there as well. The hours-long car ride was already incredibly stressful, and it was also very painful for my bladder, as I had to hold my urine for hours at all costs. The tension was so tiring and painful, and my sleep rhythm so disrupted, that I sometimes wet the bed again in the days that followed.I only went on school trips or camp occasionally. And even then, I had to be sure I could more or less secretly tuck a towel into my underwear. However at these moments, nighttime wetting wasn’t usually the problem. However, not being able to pee for hours, because we were on the bus, or on a nature walk, or a boat trip, was so incredibly difficult and painful that I couldn’t enjoy it. The pain made me isolate myself, stay behind, and not participate actively, or only half-heartedly. I couldn’t explain what was going on, neither to myself nor to others. Once I had tensed my bladder, it was very difficult to return to my normal body tension. Then simply urinating became difficult, and the urge would start again after only half an hour. It affected my entire body, my bowels, appetite, concentration, and endurance. I was often dejected and felt inferior. The thought kept running through my head that I still couldn’t quite flip the switch on bedwetting and toilet training, which others had already flipped at the age of three or four. That I had to look within myself and therefore also blamed myself. The bedwetting stopped for the biggest part when I was about 14-15, but the painful, sudden urge and paralysis caused by tension persisted until I was 18 or 19.
Building a relationship, whether a friendship or a romantic one, is and has always been influenced by what I want to share about myself, what I carry with me from my past, and by fear of the future. The urge to tackle and solve my problems myself runs deep, and keeping people at a distance is a consequence. Shyness is inherent in me, but I wonder if my physical complaints hadn’t been so deeply shamed, whether I would have become as introverted and closed off as I am now. Everyone is who they are, and that’s fine, but I feel like my bladder problems from childhood have cost me a lot of joy. My closed-offness is certainly a consequence of that, and many people know me like that, but no one knows why I became the way I am.
Living with Ehlers Danlos Syndrome 