By Ben Harvey
I was 15 years old when a spinal cord injury (SCI) during a game of rugby changed my life forever. Fortunately for me, I had some people in my inner circle who had experienced similar injuries, and when they came up to visit me in the hospital, they had one piece of wisdom to share – losing the ability to walk wasn’t going to be the hardest part of my recovery, navigating the bladder and bowel issues that come with life after a SCI may be.
SCI occurs when the spinal cord is damaged, resulting in partial or complete loss of motor and sensory function below the level of injury. This paralysis affects not only movement of your arms and legs, but the torso and pelvic organs, too. Depending on the severity and level of the injury, people will experience various degrees of impairment, including difficulty breathing, impaired sexual function, and arguably the most problematic – loss of bladder and bowel control. Incontinence can present in many forms, including urinary or faecal leakage, unpredictable accidents, or even a complete inability to control emptying. Whether this be through a loss of sensation or inability to recruit muscles that would assist in voluntary voiding of the bowel or bladder, the loss of certainty and independence can lead to a desire to self-isolate, and also, more time than feels fair is spent in attempts to eliminate waste from the body. I’m more fortunate than some as I have full bladder and bowel sensation, so I know when I need to go, but SCI can also cause an overreactive bladder, and that means once I get the urge, there’s no time to waste before involuntary voiding is imminent.
For many living with SCI, regaining control of bladder and bowel function is a greater priority in their recovery than the ability to regain use of their legs. Continence management is one of the biggest physical, psychological and social challenges in life after SCI, and one that is not openly discussed due to social stigma. Incontinence is often associated with shame, embarrassment, and uncleanliness, leading to discrimination and isolation. These feelings can prevent people from seeking necessary medical support, or even basic social interaction. Incontinence impacts mental health, self-esteem, and overall well-being, compounding the challenges already faced by individuals with SCI.
At the time of my accident, I would have best been described as an outgoing high-achiever and an avid sportsman. If there was a fun time to be had, I’d be the first one there – and at 6ft 4 my presence was hard to miss. Incontinence and the challenges of adjusting to a new way of living with a diagnosis of quadriplegia, weren’t things that I felt I could discuss. At 15 years old, people had earned some pretty unfavourable nicknames for far less!
Personally, I suffered in silence for many years, with only my immediate family knowing the issues I was facing. I withdrew from social events, and from the amazing friends who had supported me each day of my recovery in the spinal unit; it felt like the only choice.
My growing self-isolation resulted in two of my best friends arriving at my door to stage an ‘intervention’, concerned I was becoming a recluse. In truth, I was living with a problematic bowel regime and suffered anxiety about leaving the house in case I needed to use the toilet. I felt extremely uncomfortable having the conversation with them; I was embarrassed about something completely out of my control, which in reality was quite a common experience for someone with SCI. To my surprise, they were totally unfazed, and even relieved to learn that I wasn’t deliberately withdrawing from them. I quickly learned the value of a supportive and knowledgeable network in getting you through the challenges of life, and incontinence.
Interpersonal challenges aside, society does not make it easy for people with continence issues to go out in public. Have you ever had to limit your fluid intake before an event, so you won’t be rushing to find a bathroom? Or googled venues beforehand to see if there would even be a facility you can use? This is the daily reality for people with SCI. Whenever I go out, the first thing I do is figure out where the accessible bathroom is, so I know exactly where to go when I get the urge. For many of the reasons addressed earlier, we simply can’t hold it forever! When it’s time to use the bathroom and it’s occupied by someone who has the option to use another facility, it can be problematic. It’s also a common experience that people use accessible bathrooms for additional ‘privacy’ to avoid the embarrassment of making sounds or smells in a public bathroom. So next time you’re standing in a bathroom line and thinking about dashing off to the accessible toilet, I hope you take a moment to consider the options available and who may be relying on each.
To this day I’ve only discussed continence challenges openly with my “inner circle.” No doubt, there are people close to me who are reading this article and learning of my challenges for the first time. I still find continence a difficult topic to broach, but once it’s out there and people understand my situation, it makes future conversations seem normal. If being open about my experiences helps even one other person gain the confidence to talk about their challenges, I’ll be happy.
Ben Harvey is a Brisbane based disability advocate, speaker and writer with lived experience of a spinal cord injury. Ben is represented by Champion Health Agency, and is passionate about dispelling myths surrounding disability and improving disability representation in society.