Whilst going through my Facebook this morning, shortly before breakfast, I noticed that an FB friend had posted a brief synopsis of what her life has been like with a chronic condition, a condition which she has had since birth, a condition same as mine – Bladder Exstrophy. I have never been shy about what my health issues are, but maybe a brief history may help other understand why I get really annoyed with the medical community; and hopefully help other see how I have navigated it all, so that they can take inspiration in how they too can advocate for themselves.
I was born in 1971, the first child of two immigrants from Kaunas Lithuania and Punsk Poland. Both my parents were older, by 1970s standards, and really wanted to start a family as soon as possible. I was the first one, and back in those days there were no ultrasounds that could have prepared them for my birth. I was born at Women’s College Hospital in Toronto Canada, and I was almost immediately whisked off to the Hospital for Sick Children (one of the premier international pediatric hospitals). I was lucky enough that my first urologist was a Dr Robert Jeffs – who went on to found the Pediatric Urology Research Centre at John Hopkins University and the teacher/mentor of the current head – Dr Gearhart (who many Bladder Exstrophy parents sing the praises of). I had my first surgery at 2 weeks old – back in those days the initial surgery (called “closure” wasn’t done until the child was 4/5yrs old as a newborn can only really lose about 2tsp of blood before needing a transfusion). So for the first 3 months of my life I was in an incubator, recovering from my first of many surgeries.
To backtrack, what is Bladder Exstrophy? I was born what is known as Classic Bladder Exstrophy – what most surgeons will find in their text books whilst in medical school. We are rarity, most urologists will go their entire careers never having met one of us; depending on which statistic you want to believe, we are either 1:70,000 or 1:30,000, either way we are extremely rare. I was born with a partial opening of my pelvic floor, my bladder inside out and practically a non-existent urethral sphincter (the human body has over 50 sphincters). My first surgery, I have an incision that goes from my anus all the way up to my lower abdomen.
Growing up I was incontinent. I had no psychological support or a social worker to help me understand why I wasn’t normal. All I knew was that I was treated like shit by school mates, because I smelled, I pee’d my pants, I wore diapers. The worst culprits were actually the Lithuanian Community in Toronto, which is why to this day I don’t associate with the Lithuanian Community in Toronto – I’ve found more support from my Canadian friends than the shits that make up my parents’ cultural community. Teachers were no better, I wasn’t allowed to go to the toilet in the middle of class to change my diaper. My coming up several times completely drenched forced my father to take time off work to lay into the school Principal for affecting my health – it took the threat of a lawsuit for the teachers to actually allow me to use the toilet when I needed. This was elementary school – imagine, an 8yr old feeling completely isolated, treated like a pariah by classmates, her cultural community and teachers who refused to believe the letters sent by the Department of Urology from my hospital. I was lonely. I hated myself and hated my body.
What is it like growing up with a chronic condition? I think it depends on the condition itself – because mine is urinary based, there is the standard “oh she’s just lazy, her parents were too lazy to potty train her”. There is more respect and support for a child with Type 1 Diabetes or a Heart Murmur than a child with a urinary issue – it’s that whole societal attitude that anything to do with the urinary tract is just dirty.
I grew up hating my body, myself. I was molested by one of my father’s cousins. It only stopped when I realised that he was also molesting my siblings and the nuns at my high school, unlike the elementary school, were sincere with saying that we could come to them if there were any issues at home. Those nuns – the Sisters of St Joseph – saved me. They moved to quickly, getting the police involved, the catholic children’s aid society, getting me therapy and yanking my parents in for a conference. It was because of those nuns that I actually started developing a strong sense of self and started advocating for myself.
I have had 10 surgeries so far. I say so far, as I suspect there are many still to come.
What has been the effect on my psyche due to my medical condition? As mentioned, I hated myself. I actually attempted suicide in my teens, the pain was too much. I cannot have children – as I have been warned by multiple surgeons (urologists, uro-gynecologists) that I have a 50/50 chance of surviving a pregnancy. Because of my initial surgery (which included cutting right through my clitoris) and subsequent surgeries I think of my body in a dispassionate fashion, as if it were just a medical specimen.
Effect on my parents? They didn’t have the support they needed either, how does a parent deal with a chronically ill child? They have no one to talk to about it. My paternal grandmother, when she was alive, was a nurse in Australia and she quizzed every possible surgeon about my condition. My parents atleast could talk to her, support each other. My father was so relieved when I told him that I am not having children, as it turns out he was terrified that I may try to get pregnant. My mother has a will of iron and she has always pushed her way into Recovery Rooms, even when family members are not generally allowed. But she too has been influenced by society, thinking while I was growing up that I just needed to make an effort – she wasn’t mean-spirited, she just was trying to do the best for me.
As for the Lithuanian Community in Toronto – I have the most vitrol for it. The treatment I got in Lithuanian daycare, Lithuanian school was truly vile. No one wanted to associate with me, because their stupid parents thought I had a disease, not a physical malformation of my urinary tract. So their precious dumplings were told that they would catch what I have. I was alone for most of Lithuanian School and looking back I’m okay with that, they never would have been decent friends anyways. It was so bad that I remember the essay we were asked to write in our final year of Lithuanian School, of what we learnt about during our 10 years; I wrote that I learnt about discrimination, hatred, prejudice, and how vile people can be. The teachers were shocked, but I stand by my essay at the time. But I am truly thankful and grateful for my non-Lithuanian friends, they have been my rock.
So where am I right now in my journey? I have a husband – which means I have found someone who is willing to take part in my journey. So I have that home support that I have always craved. Because I have been so used to being alone, it is still difficult trying to share as for most of my life I have found it easier to just hide my pain. I’m learning, learning that it’s okay to ask for help, but it’s a process that will take time. In terms of my heath – it is declining.
I have had sepsis twice – someone who uses a catheter has a higher chance of developing sepsis. Because of all the infections I’ve had most antibiotics don’t work on me, in most cases I need to just ride out the pain and pray that my body can yet again deal with the infection on its own. I cannot catheterise anymore, I have an indwelling catheter that needs to be changed every 8 weeks. Everywhere I go I need to think of where all the toilets are, how easy is it to get to them, do I have enough supplies with me in case I have an accident. I need to watch out for potential bladder stones, and because I have an augmented bladder I have a higher chance of bladder cancer.
So that’s my life. At least I have a husband and an insane cat in my life
So to those who have gotten to know me in the UK – when I mention that I would prefer to see a specialist and not some ridiculous GP or a community nurse, it’s usually because they do not have the training to deal with patients with complex medical histories.