“If we can share our story with someone who responds with empathy and understanding, shame can’t survive.”
~ Brené Brown
‘Oh, Nicole!’ That’s how the email started.
‘Darling friend, I’m so sorry to hear you are still battling Lyme disease. I hope you’re on the mend soon. Just wanted to give you some advice. What you write stays on the internet forever unless you decide to remove it, and even then it may be too late. So why on earth did you write about having incontinence? Nic, pull it down as soon as you can. That kind of stuff is so damaging for your image, and if you ever get a publishing deal you’ll regret this kind of over-sharing. Trust me.’
Over-sharing? I don’t think so. Damaging? Some people will judge me, for sure. But they are not my people. You, dear readers, are my people.
Here’s what I know about my tribe, and about life in general.
Shit happens. Terrible, awful things can happen to good people for no reason. Life-changing accidents can happen in the blink of an eye. Wear and tear, illness and calamity can render the most sound of bodies and minds suddenly limpy, broken or cobbled together with tape, string, tears, stubbornness and fervent prayers. Many illnesses and incapacities are invisible. People live with all kinds of pains, traumas and problems that most people around them will never even guess at.
Right now I am suffering from neurological incontinence. Inflammation in my brain and nerves makes a signal go haywire and sends a message to my bladder instructing it to void. Which it does with no permission from me. One minute I have a full bladder, the next minute my bladder is emptying wherever I happen to be and no matter what I am wearing, doing or what my plans might be. It’s happened to me dozens of times over the years since I first began treatment for Lyme, and my solution is adult diapers. Which mostly work, and sometimes don’t.
People can suffer from neurological incontinence as a side effect of MS, advanced Lyme disease, brain or spinal cord injury, brain lesions, degenerative brain diseases, or the long term effects of radiation or cancer treatment, alcoholism or diabetes. It affects men and women, children through to people in old age. It affects me.
One day it may affect you or someone you love.
Few of us get a free pass through life with no adverse side-effects! My dear friend Carly-Jay and I often have a laugh over the bits of our bodies or bodily functions that fail us. We belong to a club of people who live well despite how our bodies sometimes misfunction or misbehave. We call that club the Unreliable Club and I’m sure some of you are already card-carrying members. (Maybe we need t-shirts!)
When I was first diagnosed with neurological incontinence (which comes and goes in me – I last had an attack a few years ago!) I looked everywhere for information and found almost none. It’s something no-one talks about.
So, I’m talking about it here. It’s not the end of the world. It can be managed. And it’s nothing to be ashamed of.
It’s just wee. Everyone does it. Every single day. It’s a normal part of life, and for some people it’s a part of life that doesn’t work well for any number of reasons. If more people talked openly about this kind of thing we’d realise just how prevalent these kinds of issues are AND THEY ARE NOTHING FOR WHICH YOU NEED EVER FEEL SHAME.
The Continence Foundation of Australia offers the following statistics:
- Urinary incontinence affects up to 13% of Australian men and up to 37% of Australian women (Australian Institute of Health and Welfare report, 2006).
- 65% of women and 30% of men sitting in a GP waiting room report some type of urinary incontinence, yet only 31% of these people report having sought help from a health professional (Byles & Chiarelli, 2003: Help seeking for urinary incontinence: a survey of those attending GP waiting rooms, Australian and New Zealand Continence Journal).
- 70% of people with urinary leakage do not seek advice and treatment for their problem (Millard, 1998: The prevalence of urinary incontinence in Australia, Australian and New Zealand Continence Journal).
- An Australian study found that over a three month period, 50% of women aged 45-59 years of age experienced some degree of mild, moderate or severe urinary incontinence (Millard, 1998: The prevalence of urinary incontinence in Australia, Australian and New Zealand Continence Journal).
- The prevalence of urge incontinence, which is strongly associated with prostate disease, is fairly low in younger males and increases to 30% for those aged 70-84 and 50% for those 85 years and over (Australian Institute of Health and Welfare report, 2006).
It’s wee. It’s not working in a very controlled manner in me just now. That’s okay. I have bigger stuff to think about. This is just small stuff, not worth sweating over.
If you feel the need to unfollow me, unfriend me or avoid me because of my bladder control issues and embarrassing habit of oversharing then go right ahead. I’ll still be here for you when life gets bumpy. And then I’ll remind you that you can still live the dream while rocking adult diapers and I won’t love you any less for it. Instead, I’ll be cheering you on!
Much love, Nicole xx