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Luce's story

Happy Birthday To Me: Continence, Contradictions, and Conversations


When I realised that World Continence Week started on my birthday, I have to admit I felt snarked. 

‘FFS,’ I thought. ‘Brilliant. Why do I get an international celebration of my damp pants, rather than National Beyond Glamorous and Amazing Women Week?’ I know this week itself is a positive thing, a galvanising effort to make a difference to the millions of people with continence issues, raise awareness and break the taboo, but it is so close to home for me.

The week of my 41st birthday is the 10th anniversary of getting signed off by physio after the birth of my first baby, and the moment when the real battle for lifetime control of my leaking began. Physio is the springboard I discovered, you still have to do the work yourself. It was a decade of huge annoyance that the shame of incontinence persists at all, and genuine upset as it does persist, so it makes being a leaky person suck. For years, I was lost.

The good and the bad of it all is most epitomised by the knackered nether clinic (or urogynaecology as my hospital persists in calling it). It’s a world where physiotherapists, continence nurses, imaging specialists, doctors and surgeons worked to fix fannies, and it was terrifying. My filthiest bits were frequently on display. But it was also a salvation. Though my ruins were on display, the kindness and acceptance I found there helped me navigate my way home. I learned to keep walking forwards without falling off the edge of the earth.

Finding my voice, for me, involved learning about my condition, seeking information, drinking too much wine, dissolving into self-pity and then whacking that cycle on repeat for years. But eventually, with some love, help and caustic humour, and my mandatory transition, as I turned 40, into someone without a single fuck left to give for watching any more women, or men, feel ashamed of a broken body - I learned to understand my bodily fallibility and see the holes in my education. These had not led me to incontinence, but they meant I couldn’t understand it, and I needed to, to see what was fixable and what (unluckily for me) was not.

Deciding to come (un)clean about being incontinent - what it felt like, how it seeped into everything from my self-esteem to my sex life, how I coped and didn’t cope - wasn’t an obvious life goal. But I was overcome by a need to talk. To say out loud: incontinence is common, but not normal, and that even above that we all need to grow up and be more sympathetic.

People often ask if I’ve always been confident talking about this stuff. I should be so lucky. I was born with a feminist roar but not a lack of embarrassment. I had to build up that Teflon Tena bravado over a decade as my body stopped working and so did my mind, just at the point they were supposed to be coming into their prime.

When I realised I was racing through maternity pads faster than my peers, and exhausting the supplies in my hospital bag, I took a trip to Mothercare. I faltered in front of the nasty shrine to maternity mess. Piles and piles of plastic packaging looming over my tired fat head, shouting about shame with the language of discretion, and hammering their point home with pictures of knickers and oversized tear drops representing pee.

These were squished in next to breast-pads for milk that spurts in sixteen directions at once, special towels for gloopy lochia, and nappies. Nappies in every conceivable size and shape, for girls and boys, for swimming and sleeping, for potties and pulling up, and for useless broken minnies like mine.

I’d love to say I rose above unrealistic ideas about bodies and childbirth, refused to enter willingly into the shameful silence of a condition that’s a standard joke and so stigmatised that its name, incontinence, is synonymous with immoral lack of control, people who talk too much, people who have no dignity and restraint. I’d love to have cheerfully assessed my wee flow as ‘medium’ and felt no irony about throwing my continence napkins into a basket with my baby’s. But no. I faltered, as I say, cowed by compressed cotton, and did the only thing a grown-up reduced to the panic and fear of a toddler who’s had an accident in public can do: I rang my mum. She bought me my first supplies because on top of leaking, the paraphernalia and drudge of incontinence were just too much. 

I wanted to stamp my foot and say it wasn’t fair, but I knew I’d die if I did that because I’d leave a puddle on the shop floor. But it wasn’t fair. For a start, it was expensive. I wanted to spend the child benefit on Jellycat toys and gin, or at least new contraptions to harness my still expanding bosom, not waste it on Tena Lady™. For another, it was grim. I didn’t want people to seeing my shopping cart laden with absorbent towels, even if I still suspected this was some female punishment I was making a fuss about.

When my mum wasn’t there – she lived miles away - I made do with the pre-pregnancy sanitary towels left gathering dust in my bathroom, even though they couldn’t really handle pee, which doesn’t drip steadily like menstrual blood, but pours like water if the floodgates open. Then, I sent my husband to brave a local chemist. 

That shop, three minutes walk from our house, three million light years from my husband’s comfort zone, became a haven. An elderly pharmacist stepped in, the first medical type to offer support, and between them, they worked the full gamut of adult diapers until my husband was an expert in which ones were needed and the pharmacist knew to be kind and pretend he didn’t know who I was. I’m not sure which of the three of us was more relieved when online shop became a thing and we were all saved.

Initially, I thought my incontinence was my fault because I had not been good enough at birth. That I was being punished for becoming a hot sweaty mess and not channelling enough yoga or birth positivity. But that was madness talking.

It’s obvious why accidents are embarrassing. We all remember that girl in Class One, too scared to put up her hand, as a puddle spreads out from under her short grey skirt. But as an adult, this regression sent me into a downward spiral of depression, shame and self-hate.

My entire experience of becoming incontinent was simultaneous grimness and hope. Becoming wildly depressed about it, blaming and berating myself and my lack of resilience for the depression because nobody made the link to me for years, having surgeries and other interventions, was awful. But it was also, at times, funny, moving, interesting and a saviour of sorts; it gave me some of the best allies a patient or woman could find, and taught me some valuable life lessons. From the usefulness of black trousers – chic and masking for accidents, buying you time to excuse yourself and change, to my enormous luck in the plain and simple fact that most people I knew were quite nice underneath any veneer of social embarrassment, and most are capable of loving and accepting you anyway, even if your undercarriage doesn’t always work to order. I didn’t live somewhere where my husband would be encouraged to shun me, replace me, cast me out of society, I had options and choices and a big shouty dirty mouth that got louder as time went on.

Incontinence is still one of the last medical taboos. Mired in and connected to the flagrantly misogyny of women’s private parts being considered dirty, messy, unmentionable and unclean. As if menstruation blood isn’t just ordinary normal blood, as if our fannies themselves are disgusting, frightening affronts to the polite order of things. I mean, seriously. Fannies are like voting intentions: private but they are not a hideous secret. It’s okay to talk about both, if you want to. Nobody is forcing anyone to, but if we can’t agree on this then nothing will ever change. Women will fall into traps of utter desperation because they feel abnormal and broken, nobody will mention the psychological damage of shredded wee and poo and sex parts, and children all over the world will still face discrimination because they can’t go to school when they are on their period. Enough. And especially enough of ignoring the cruel BOGOF of incontinence and depression. That can literally BOG OFF. 

For the record, if you are reading this and you feel blue, and too upset to bring up either leaking or depression, it isn’t your fault. Incontinence is linked to depression and poor quality of life. Scientifically. There are loads of studies. One, published in Canada in 2011, cited urinary incontinence as one of the five strongest predictors of postpartum depression (depression after childbirth), along with breastfeeding not working (another area of absurd body shaming for mothers that makes me incandescent), maternal health problems and hospital admissions, and being young (under 25). 

The study said incontinence was a surprise and that previously it had received little attention in research (good old taboos!) and noted that scientifically speaking, the research community did 'not yet fully understand the reasons incontinence is linked to depression'. I did toy with ringing them up when I first read this to explain the lethal pairing of utter stigma and being told the lie that being a pissy woman is the natural order of things (so feeling crazy for hating it) plays a big part, along with the cost of continence aids and the way pissing yourself all the time precludes getting on with normal day-to-day life, let alone joyous things, like laughing, dancing and spontaneous sex.

 For millennia, we’ve brutalised, excluded and ridiculed men and women who can’t keep their pee or poo in place, even though we all have bodies and know that they can break. It is hard to properly understand the casual indifference of this, or its lasting effect. Especially when many people can’t get beyond jokes about a weak pelvic floor, and they need to. We need to hear stories about it, to normalise the experience enough for people to get confident enough to ask for help, and think they deserve it. Because they do. Incontinence can usually be cured, or massively helped, by physiotherapy alone. So much wasted sadness that doesn’t have to be there, because with less stigma, people could talk more and make meaningful choices about care.

To rebuild my sanity, I started to talk and share and write about it, because at least that was something I could do to try and stop other women feeling locked in the little girl’s room, blaming themselves, imagining they don’t deserve any better than walking around with a creaking mattress between their thighs, muff rashes and jeans that need washing every time they go dancing. 

Which is why we need weeks like this. If one in three women experiences incontinence in her life, but thousands and thousands of them never even try to get treatment, we need to ask why and do whatever we can to help them feel able to get help if they want it. Personal shame is understandable, because wetting yourself on the carpet like a naughty kitten is a bit too yucky for almost anyone to handle, but shame as a global state of affairs? That is bullshit. And why we all need to try a bit harder and work together, and celebrate that work and stigma smashing whenever we can.

©2018 #pelvicroar