James

Read more about Tara’s condition
A Tethered Cord is a disorder in which the spinal cord is “stuck” to a structure within the spine such as dura, scar tissue from a previous operation, a bony spicule, or a tumor. Incontinence ­–­ the loss of bladder and/or bowel control ­­– may result from this disorder.

Tara

Like many individuals (an estimated 200 million people worldwide) who experience incontinence (the loss of bladder and/or bowel control), Tara has spent most of her life struggling to keep it secret.

“For all my life I’ve struggled to keep my disability a secret,” she states. “Many people in my life have no idea that I have a disability. My spinal cord was fused to the spinal bones at birth. Surgery was performed when I was 18 months old, releasing the spinal cord, but damaging the nerves to the bladder and bowel – leaving me with double incontinence.”

Her doctors recommended a urinary stoma operation (which was irreversible at that time), but her parents refused. Having heard about a technique to empty the bladder called intermittent catheterization, Tara’s mother persuaded the hospital to teach her this technique.

“So mum came into school at least once a day for about two years. I hated the taunting and questions like ‘Why does Tara’s mum come into school every day?’ I didn’t want my mum attending every day. So I taught myself to do intermittent self-catheterization (ISC). ‘How could a ten-year-old manage to do ISC?’ was one among several major disapproving comments by the medical profession. But I did, and I flourished.”

Still, Tara found school difficult. “School was emotionally difficult because no one was aware of the problem and it was a hard job constantly trying to hide it. I just wanted to be like everyone else. When I left school I was determined to get a job, and I did. I have always been employed.”

As an adult, Tara continued to feel the constant burden of incontinence. “I have always been aware of how different I am,” she states. “I am the only person I know who goes on holiday with their luggage weighing less when they return than when they set off. Travelling around with a nine-inch catheter in its own make-up bag, spare pads, and spare clothes all means careful planning and thinking about the type of handbag I may need, while trying not to look conspicuous. Finding somewhere suitable to use the catheter (and possibly change clothes) can be hugely problematic. Imagine trying to catheterize on a fast moving train or in a small toilet on a plane. I always like to know where toilets are, and plan any outing with military precision, including all social events.”

“On a day-to-day basis, I struggle emotionally to manage the unpredictability. I work hard to appear as a highly professional woman who doesn’t smell, doesn’t rustle like a Christmas present with the noise from the pads, and doesn’t leave a trail of wet seats or have stained clothes. This struggle is day-in and day-out, but worse than that is the fear that an accident may occur. The emotional costs, over the years, are very high and I’ve had to work very hard at building up my self-esteem.”

Tara has spent her entire life struggling to keep her incontinence a secret. “I work hard to appear as a highly professional woman who doesn’t smell, doesn’t rustle like a Christmas present with the noise from the pads…”

“I may not physically look different on the outside, but I know the inside is different. I don’t have a label around my neck or a flashing light bulb above my head indicating that I’m different, but I certainly feel it. Personally, I feel that having a hidden disability is worse than having a visible one. As I’ve gotten older the second incontinence (bowel) is now causing me more problems.”

Over time Tara began to question whether she wanted to continue to pay the high costs of keeping her incontinence hidden. “I am learning to tolerate my hidden disability and for the first time in my life I am openly speaking about it. I have become involved in training health professionals about continence. When I am speaking I ask delegates to think about how some behavior and comments can make people with continence problems feel. One nurse said to me, ‘Oh I know exactly how you feel’ – no, she doesn’t; she has no idea! I want sensitively trained people. If healthcare professionals really listened to us, we could manage so much better.

“As to the future…I will continue to work hard and challenge my disability, continue to work full-time, and approach life with humor. I want to raise more awareness for the next generation coming along. I want to make it easier for people like myself, and press for more support. And finally, I want to release my Best Kept Secret!”

“I want to enlighten the world as to what it takes to live and deal with continence issues on a daily basis.”