My physical issues became apparent in my late 20th. It was a feeling of bodily exhaustion, heavy limbs and fatigue. Moving was somehow ok, but relaxing was uncomfortable. In a way it was manageable but annoying and I felt there was something wrong and I was on a diagnostic trajectory.
Also worrying were my bladder issues flared up from time to time. Just like when I was a teenager, the urge to pee hit me suddenly and hard. But unlike in my youth there were little events where I had to hold on for hours, experiencing excruciating pain. Instead the urge hit me simultaneously with the loss of droplets or a little squirt of urine followed by painful contraction of all muscles involved not to pee instantly.
This happened in flare ups which I didn’t see coming. At first I stuffed toilet paper in my pants to dry up the stains, or to be safe when I felt the next episode would come soon. Followed by incontinence pads that gave me some feeling of security, and the feeling that I was addressing this issue. In hindsight I know, being in my 20th and having incontinence issues was not normal but it felt like it was connected to my other physical issues that I was addressing already. I was convinced that getting results and treatment in that area would enhance my bladder issues too. I was dreading having to disclose this to anyone, including a doctor, given that from a young age I had kept my bladder issues a secret.
But the incontinence got undeniably worse. The flare ups occurred more often, the droplets became bigger squirts and once reaching the toilet it became difficult, sometimes unbearable, to hold those last seconds to lower my pants. The tension i got to put on my bladder and pelvic floor was so big that it became increasingly different to let go in moments I wanted to pee.
It all blew up in winter 2006. A week prior to that day my wife and I went out for a winter walk through the snow. When I got home I had to rush to the toilet and the tension on my bladder became too big before I had lowered my pants completely, resulting in a stain on my clothes and a small puddle on the bathroom floor.
A week later we were at a friend’s house and we had a good time. It was cold and winter outside while the fireplace provided a cozy heat. I had blamed the accident a week before to the cold, which probably affects the bladder for more people. We were with a friend group of 5 couples and children. Our friend’s house was big and the big living room was in a separate part of the old family house. The joy of being with friends and having a good time pushed my symptoms to the background which in a way is how we manage to live with chronic illnesses.
At some moment I felt the urge to pee come up and I totally felt ok. My mindset was like, ‘I got this, this is totally normal and I just quietly have to stand up and go to the loo’. And so I did. I stood up, walked to the door, through the anteroom that led to the hallway where the toilet is. Suddenly i freezed in horror when I felt warm pee run down my leg and I couldn’t stop. I kept walking, not knowing what to do, horrified and in despair. My jeans, my socks and shoes were soaking wet. A trail of pee was on the floor where I had walked. I couldn’t think clearly and panicked. With toilet paper I quickly wiped up the pee from the floor tiles. I grabbed my car keys and ran out of the house.
In my car I realised what had happened. I cried in panic not knowing how I was supposed to go on with my life. I couldn’t trust my body anymore and I did not understand anything of what happened to me. The shame was so deep that it affected all my body, my movements and thoughts. For weeks on the surface of my consciousness and later to a level that was not deep under my skin. I tightened my muscles even more. With the slightest feeling I rushed to the toilet. Often finding out that I was not able to relax enough to urinate while 10 minutes later a squirt in my pants warned me to rush to the toilet. 15, 20 times a day I felt an urge. At night I woke up many times from the urge while with a big effort I only managed to squeeze out a couple of droplets.
The shame I initially felt to admit to my doctor that I had incontinence issues vanished due to the urgency and severity and how it affected my life. I avoided social gatherings, always needed a toilet nearby and still I was nervous, paralysed by the thought of peeing myself again. I started using bigger incontinence protection and although it did help, the shame was no less. I guess shame doesn’t only affect a person, being ashamed toward another person. It’s just as much shame for oneself, and in my case disgust. Changing a used incontinence pad did not feel like a win for not having wet clothes. It was a defeat of my body, letting me down.
For a long time I fought the use of protective incontinence wear. Increasing the size was a defeat of the battle I fought with my body. Not having leaked was a win but the shame and disgust separated my body from my self image. No rational reason could justify why a man in his early 30th, despite some physical hardship, would lose control over his bladder. It took me years to understand my body, my disability and the reason why it happened. But understanding did not mean accepting. I tried every possible treatment that was offered by my urologist and I don’t feel bad for being too tired to keep on fighting. Having peace with my situation is the best I can do.
Living with Ehlers Danlos Syndrome 