There's only one way to deal with the undignifying symptoms of chronic illnesses

by Ruth Nichol / 19 October, 2018
Photo/Getty Images

Photo/Getty Images

RelatedArticlesModule - Chronic illness

After she was diagnosed with multiple sclerosis, Shona Daubé learned how to live with chronic illness with a smile.

When Shona Daubé heads to Wellington from the Wairarapa for the day, she takes as much stuff with her as she used to take on outings when her children were young.

These days, her essentials include wet wipes, incontinence pads, spare underwear and emergency snacks. “I’m on a special diet called the overcoming multiple sclerosis diet and quite often you can’t buy the right kind of food to eat,” she says.

She also packs extra multiple sclerosis (MS) medication and sometimes she takes a walking stick (she has four of them, each decorated differently).

“We often joke about those large bags full of every conceivable thing a parent of young children might need when on an outing,” she writes in Does My Bum Look Big with this Stick? “Going out with a chronic illness is no different.”

The book, which Daubé is selling online and also distributing free to people with chronic illness, is subtitled “How to maintain a sense of decorum and style when your body lets you down”.

“It’s not a how-to book,” she says. “It’s just saying this is part of our lives and we need to have a bit of a laugh about it. It’s about maintaining your self-esteem. If you can laugh about it, you can come out with your dignity intact.”

The list of potential indignities is long: urinary and faecal incontinence, flatulence, sweating, fainting, falling, brain fog and vomiting. And although these can affect people with conditions such as MS, Parkinson’s, muscular dystrophy and irritable bowel syndrome, Daubé says they are rarely talked about.

“Even when people with these conditions get together, they have to feel really relaxed and safe to say that these things have happened.”

Daubé, who was diagnosed with MS five years ago, wants that to change. She doesn’t mind admitting that she is occasionally incontinent – one of the consequences of the drugs used to treat MS and also because the disease can cause loss of muscle control.

Shona Daubé.

She’s particularly outspoken about New Zealand’s general lack of public toilets. “It’s as though the fact that people go to the toilet is a hidden secret. It’s something that every person does multiple times a day, but we don’t have a sufficient number of public toilets to cater for this.”

Existing public toilets often lack the facilities needed to carry out “remedial work” after an unfortunate accident. “We’re not asking for much – just a few hooks to hang spare clothes on, a few handrails and maybe an incontinence pad dispenser.”

She points out that at least women’s toilets have sanitary units to dispose of used incontinence pads, but she wonders how men cope.

For Wellington man Jeremy Seed, coping involves trying to avoid getting into a situation where cleaning up in a public toilet might be required. The desk-based army officer was diagnosed with MS in 2011 and, like Daubé, he has experienced occasional faecal incontinence.

He’s made a point of getting to know his body’s rhythms and patterns and is always aware of where the nearest toilet is. “It’s more about behavioural modification and being smart, so you don’t have a coffee [which can stimulate a bowel movement] until you’ve been to the toilet.”

Incontinence isn’t a problem for Sela Brass, who has chronic regional pain syndrome, a nervous system disorder that causes pain throughout her body and especially in her eyes. But vomiting is. When her pain gets too bad, she throws up – and not always in a convenient location.

Rubbish bins can be useful, but her preferred receptacle is the air sickness bags provided on planes; she gets friends to collect them for her. However, she has found they’re not always vomit-proof. In an incident described in Daubé’s book, she once vomited into a bag during a job interview, only to discover it had a hole in it.

Like Daubé, Brass tries to see the funny side of chronic illness. “You definitely have to be able to laugh at it. I also try to practise gratitude every day and form good relationships with people. If I didn’t do those things, I would just stay at home and put the covers over my head and say, ‘Flag it, it’s just too hard.’”

Does My Bum Look Big with this Stick? by Shona Daubé (Pink Cottage Publishing)

This article was first published in the October 6, 2018 issue of the New Zealand Listener.


Excavated cult-horror film Suspiria is an ambitious failure
98994 2018-11-14 00:00:00Z Movies

Excavated cult-horror film Suspiria is an ambitiou…

by James Robins

Released in 1977, Dario Argento’s campy Suspiria was a landmark in cult horror. Now, director Luca Guadagnino has remade it in a new style.

Read more
Scottish-Bengali crime writer Abir Mukherjee on his 'cultural schizophrenia'
98517 2018-11-14 00:00:00Z Books

Scottish-Bengali crime writer Abir Mukherjee on hi…

by Craig Sisterson

Abir Mukherjee uses India’s painful struggle for independence as the backdrop for his Sam Wyndham detective stories.

Read more
Lunchtime legends: 5 hospo stalwarts on Auckland's restaurant evolution
93848 2018-11-14 00:00:00Z Auckland Eats

Lunchtime legends: 5 hospo stalwarts on Auckland's…

by Alice Neville

Restaurant veterans Chris Rupe, Krishna Botica, Tony Adcock, Geeling Ching and Judith Tabron reflect on the Auckland dining scene.

Read more
Best Auckland BYO restaurants where the food is good too
97751 2018-11-14 00:00:00Z Auckland Eats

Best Auckland BYO restaurants where the food is go…

by Metro

Head to one of these Metro Top 50 Cheap Eats and 50 under $50 restaurants for BYO dining that won't break the bank.

Read more
Get a lesson in mezcal at new Snickel Lane bar La Fuente
99033 2018-11-14 00:00:00Z Auckland Eats

Get a lesson in mezcal at new Snickel Lane bar La …

by Jean Teng

Mezcal was once regarded as a tipple for the lower-class – now it's the hero at new bar La Fuente.

Read more
Forget the love trysts, our relationship with China is a much bigger affair
98673 2018-11-13 00:00:00Z Politics

Forget the love trysts, our relationship with Chin…

by Bevan Rapson

Ross’s tape didn’t stand up his allegations of electoral fraud, but it helpfully drew renewed attention to questions about Chinese influence in NZ.

Read more
Bill Ralston: Simon Bridges looks like a dead man walking
98830 2018-11-13 00:00:00Z Politics

Bill Ralston: Simon Bridges looks like a dead man …

by Bill Ralston

The National Party’s ongoing ructions suggest a long spell in the wilderness lies ahead.

Read more
The history of NZ newspapers would shame the Facebook generation
98735 2018-11-13 00:00:00Z History

The history of NZ newspapers would shame the Faceb…

by Karl du Fresne

In the 19th century, there were more newspapers in New Zealand per head of population than anywhere else in the world says writer Ian F Grant.

Read more