How do you tell your friends you are incontinent? How will they react?
I had Cauda Equina compression in my early 40s. One day I am an intensive care nurse, the next I have a spinal cord injury and I’m incontinent.
My new, cute handbag sadly was no good for the list of extra supplies needed for a girl; pads, catheters, hand gel, wipes, nappy sacks, dry socks and pants, and a spare set of clothes.
During my recovery from the physical side of Cauda Equina I learned that some friends I would lose, some I would gain, and some deserve a medal. No longer was I the in-control organised mum of four boys with active lives. I was Anita, stuck in a wheelchair; I couldn’t drive, going anywhere was a risk – but wet leggings are okay in your own home (note acute lowering of personal standards). Full bladder bursts of urine are not okay in your friend’s BMW however . . .
My nursing friends were supportive – angels really, kidnapping me to get my hair done, bringing food parties to my home so I didn’t miss out on social events, asking about me, and wanting to know more about Cauda Equina syndrome.
They genuinely saved my marbles! At that time, the only catheters and incontinence pads I had were pretty useless. The pads were bulky and made me sore (after a rant I finally got the best that there is for now – still too bulky, but at least I can wear jeans again!). Catheters too short, too small, and too easy to drop. The girls were exceptional and I see some as my sisters. I consider myself lucky.
It was harder with non-nursing friends. Where do you start?
Unlike my nurse friends, they didn’t have the ‘I’ve seen it all before’ attitude to incontinence. They gradually visited less, a few stayed in touch, but many didn’t understand that it took a lot of effort just to go shopping for the day. Trying clothes on was hard work and clothes were bought for function over fashion. Their reactions were the hardest to bear – dwindling contact, and not inviting me to things anymore.
This feeling was something that I had to learn to overcome. My sense of self-worth was low at the start and deteriorated further as more and more of my normal life disappeared; I retired from nursing, I was no longer able to drive, I needed assistance with mobility and care, assistance with home chores and childcare – the list was endless.
I am a resilient person – as we can all be, and gave myself a talking to – the kind of talk I would offer a patient. If I can deal with a toddler wetting the bed – and who with children hasn’t been peed on at some time?! Then why was I beating myself up? I didn’t choose to wet myself. I had no control over my bladder. I would hear a tap running, and the urine would flow, or I would simply sit down and the floodgates would open.
I went on a mission to help myself, which meant finding the courage to challenge my doctors – to say, ‘there must be something more than this?’
I wanted the confidence to be honest with people, not to feel inhibited or embarrassed by a medical dysfunction.
My then friends may not have been able to cope with my bladder, but I could.
I couldn’t change their feelings towards me – or be the ‘old me’ they once knew, but I could change how I felt about them. I also started to like me and I think, became a better friend. I was the one organising things – a spa trip or afternoon tea. Concentrating on my friends’ needs helped me like myself more.
The caring nurse part of me made friends online with others who shared my condition. Some I have met in person, some I plan to meet. The forums are a great place for sharing experiences with others who understand – or having a good rant about the size of pads and stories of peeing all over your urologist.
‘The balloon will burst!’ is code between me and my family for I need to cath now!
Relationships change as we change. I realise that those friends who couldn’t cope with the balloon busting still don’t understand, and that’s okay.
To be courageous and honest with friends who stick by you, means that those friends will also grow, be honest, and stick by you when the balloon does burst. They don’t judge – it’s you they love, not your bladder and wet pants.
It’s true to say that friends get you through the rough times, but you can still get them through their dark times too. Life is a journey, as are friendships – maps, new roads, new adventures, and new balloons to burst.