Smashing stigma on continence

At 17 years old, Anne had a horrible inkling that she was losing control of her bladder. Embarrassed, she swept the issue under the rug, thinking it was just something she had to put up with, even after the symptoms worsened. It wasn’t until an MSWA Nurse sounded the alarm did she finally address the elephant in the room. 

My name is Anne Cooper and I was born in England in 1950. 

I was diagnosed with multiple sclerosis (MS) at 35 years old, but I was experiencing symptoms long before that. 

One of which was when I was 17; I was resigning from the St John Ambulance cadets while handing in my resignation when my bladder just decided to void – I think that was the most embarrassing moment of my life and the start of my bladder problems.

I’ve put up with it because as far as I was concerned, it’s just one of those things. 

Over the years, more strange things happened that I couldn’t explain – dishes that kept falling out of my hands, the tingling sensations in my hands and feet, the growing incontinence problems. They were not imagination, there was an explanation and it wasn’t just that I am uncoordinated.

My first thought after hearing my diagnosis was, “My god, I’m going to die.” 

Back then, there was no Dr. Google, so it was easy to think the worst. Later, after a visit with a specialist, I was given a better understanding of MS and was reassured by the information that was shared with me. 

Upon reflection, I believe that I had lived with my symptoms for most of my life and I was relieved to finally have an explanation.

Over the years, I’ve learnt to adapt and thrive even with the obstacles my illness presented. I moved to Australia after learning the climate was better for MS (and hearing rave reviews of the lifestyle from friends who chose Australia as their home), I raised my kids, worked in a full time position, retired and even went on a caravan trip with my husband travelling 600kms out from Perth. 

Throughout all this, my bladder issues persisted and I thought it was just something I had to deal with. In 2023, I told an MSWA Nurse I was losing sleep at night because I had to use the restroom multiple times. Concerned, the Nurse immediately referred me to a GP for help. I was then diagnosed with incontinence. Incontinence is the lack or loss of control of the bladder or bowel function. 

Before this, I would have been very ashamed to talk about my incontinence but now I am very proud to share. 

I am over 70, I managed to learn how to use a catheter. It wasn’t until I started the self-catheterisation that I realise this was a medical condition and it can be treated, I felt so much better knowing that. 

I think anyone with continence issues – whether they have MS or not – should reach out for help.

As a member of the MS Australia Lived Experience Expert Panel (LEEP), I shared more of my personal journey with continence on episode 79 of The Raw Nerve Podcast. 

On the podcast, I learned about the National Public Toilet Map, a free mobile phone app where you can find the nearest toilet and facility details – such as disabled toilets, changing rooms and opening hours – across Australia. This would have been of great assistance to me for most of my adult life, if only I had known about it!

Incontinence is a shared health issue and is not something anyone should feel isolated by. It’s important to recognise symptoms earlier, ask for help and know that support and management options are available.  

With World Continence Week (15-21 June) on the horizon, it is a valuable opportunity to raise awareness on incontinence and highlight the resources available. 

The Continence Help Australia hotline (1800 33 00 66) provides free, confidential and professional advice from continence nurses. The organisation also manages the National Toilet Public Map.