First person: ‘Chronic illness doesn’t care if it’s your birthday or you’re getting married’
By JULIETTE WILLS
UPDATED: 11:15 GMT, 5 March 2012
When sports journalist Juliette Wills was diagnosed with a devastating illness, her relationship and career crumbled under the strain. But despite the relentless pain and her physical limitations she is finding joy and success in new ways
Yesterday I visited a friend for coffee, cleaned the bathroom and made a pie. Today I woke at dawn, swallowed some painkillers, had to be helped into the bath and was unable to leave the house. Things weren’t always this way, but for the past decade, chronic illness has decided my fate each day. I simply have no say in it. My life-changing moment came in the bathroom of a motel in France in the summer of 1999. I was covering the Formula 1 Grand Prix motor racing season for men’s magazine Loaded. I had already been to Barcelona, with trips to Monaco and Australia coming up. Between races I wrote a football column for a broadsheet. I’d just bought a flat in Brighton. I was 27 years old; happy, independent and fiercely ambitious. I certainly hadn’t expected to see blood in the toilet bowl that morning. Worried, but not panicked, I made a mental note to visit my doctor, and flushed it away.
My whole world went with it. Ulcerative colitis is a debilitating form of inflammatory bowel disease (IBD). There is no cure, but in most cases it can be managed. I cut out wheat and dairy from my diet, upped my vitamin intake to counteract the steroids I’d been ordered to take and started doing yoga. My boyfriend, a ruggedly handsome 1950s throwback, took me out dancing every weekend. I kept fit, and although I was exhausted, I wasn’t in any pain. One morning, six months after my diagnosis, I woke abruptly, engulfed in such excruciating pain around my ribcage that I was unable to catch my breath. I couldn’t bend down to dress myself without screaming as pain shot through my hips. I was sure it had nothing to do with the colitis. This went on for weeks until one evening I passed out, and woke with a raging fever and stomach cramps. I was admitted to hospital where I underwent emergency surgery to remove my large bowel as it had begun to perforate. I came round from the operation to find I had an ileostomy – a blob of small intestine protruding from my stomach, encased in a clear bag.
My hair went grey overnight; my weight fell from eight to six stone. I had tubes and needles inserted into various parts of my anatomy and a 12-inch scar from under my ribcage to my pubic bone. I was repulsed by what had become of my body. My boyfriend visited every day, but once I left hospital three weeks later, our relationship ground to a halt; I needed space, both in an emotional and literal sense. I was in a state of shock, barely speaking to my parents as they did their utmost to care for me, but the pain had gone. Nine months later I went through an eight-hour operation to give me a new internal plumbing system. The ileostomy was removed, and the colitis itself had been dealt with: I could move on and get my career back on track. But within weeks of my recovery from surgery, the same pain was back with a vengeance. It made no sense.
I doubled my prescription painkiller doses, worked when I could and just about kept my head above water. I was too proud to take up my parents’ offer of moving back home; Dad would bail me out if I needed help with a mortgage payment or gas bill. When I experienced a rare whole month of barely any pain, I flew to Las Vegas with friends for a rockabilly break, where I danced every night and rode the roller coasters, the ultimate two fingers up to my illness. Naturally, my frail body didn’t cope and I could barely walk for the last few days of the holiday and the six months that followed.
In 2004, aged 32, I was finally diagnosed with ankylosing spondylitis, a debilitating, chronic inflammatory arthritis, often triggered by IBD, in which the sacroiliac joints (which join the base of the spine to the pelvis) become inflamed. Scar tissue forms in the spaces between vertebrae and eventually they fuse together, causing limited movement of the spine and, in my case, constant, agonising pain in my spine, ribcage, shoulders, neck and hips.
Having tried every treatment to no avail, the local health authority agreed that I could trial a new injectable drug. The pain disappeared overnight then, a few months later, came back with vigour, but sporadically. I had no idea how I would feel from one day to the next; I just pushed myself to do as much as possible whenever I woke up and felt OK, from writing a book to decorating my flat. I had good weeks and bad weeks, and just rode the wave.
One night, in February 2007, I was introduced to a handsome, brooding, aloof, chain-smoking French guitarist called Gautier at a gig in London. Sparks flew. He visited me in Brighton two weeks later, proffering a typically Gallic shrug when I told him about my illness. I had been told that the effects of this drug on a growing foetus were unknown, so I mustn’t get pregnant; add all the post-surgery scar tissue and the fact that I could barely look after myself and having a child was not an option. Gautier was unfazed, while I was becoming used to having decisions made for me.
I flew to Gautier’s home town in France for his 30th birthday in March. He proposed that weekend. We married on an extraordinarily sunny day in September at Brighton’s Royal Pavilion. A cocktail of prescription painkillers enabled me to stand in my four-inch heels during the ceremony. He already thought me beautiful; it was my determination, I think, that he was beginning to admire.
We had no money for a honeymoon so, instead, we got ourselves a cat. Two summers later, with Gautier in full-time work in the computer games industry and playing in his band, I sold my flat and we bought a 1930s house with a white picket fence in the Brighton suburbs. Over the past year, the effects of my drug appear to be wearing off; I wake up each day at dawn with the pain tearing through me. Some days I manage to go to the supermarket or clean the kitchen, but most mornings I can’t reach my painkillers or get out of bed without Gautier’s help. Although I often have a glazed expression from today’s dihydrocodeine and last night’s diazepam, and walk with an awkward, twisting gait, wearing a slick of red lipstick and my leopard-print coat means I always look OK, even if I’m falling apart. Half the battle is psychological.
Chronic illness is wicked and cruel. It is debilitating, exhausting, destructive, isolating and totally unforgiving. It knows no bounds, and has no mercy. It doesn’t care that it’s your birthday or you’re getting married; it’ll still show up and ruin your day. It’s hard to have hope when you know there’s no cure; near impossible to stay positive with no light at the end of the tunnel. There is no such phrase as ‘when I’m better’, and I am constantly reminded of my own inabilities, surrounded by friends with great careers or new babies. I feel I have no purpose; I’m 39, but neither a career woman nor a mother.
Then I look at Gautier and the cat and think, ‘They’re my purpose, get on with it.’ On the odd days when my pain is manageable, I’ll head to the local RSPCA centre where I take a little dog on a walk, for as long as my hips allow. Maybe I’ll do some washing and bake a cake. If I’m OK to drive, Gautier and I might head to the seafront for brunch or to the zoo as we did on my birthday. On a good day I’ll wear Chanel No 5; on a bad day Gautier puts up with the less attractive scent of Deep Heat.
Wearing a slick of red lipstick means I look OK, even if I’m falling apart. Half the battle is psychological
If my life were a weather report, it would read ‘mostly cloudy, with a few bright spells’, but those bright spells are the moments that keep me going, despite them diminishing rapidly. Still, I have confidence at times where many fit and healthy women don’t: on the beach, despite my scars, I wear a bikini. If anyone stares, I tell them that I was mauled by a bear. When Gautier goes away with his band, I don’t sit at home fretting about what he’s up to, surrounded by free drinks and beautiful women. I trust him implicitly; he gives me no reason not to. On the other hand, I’d understand if he left me for one of them, but if I worried all day, I’d go insane. We are not destitute, but my illness has had a huge impact on my finances. My underwear and beauty products are supermarket own-brand, my Topshop jeans second-hand. I haven’t been to the hairdresser in a decade. I would love to go to New York this summer with Gautier to celebrate my 40th birthday, but we’d have to win the Lottery for that to happen. I’m hoping we can at least afford – and my illness permits – a weekend on the Isle of Wight.
If my parents are the glue that holds me together, Gautier is the Sellotape on top. He is incredibly wise; the calm to my storm. His love gives me emotional stability where there is so much uncertainty elsewhere in my life.
My closest friends, Bo, Alice and Cherry, offer me invaluable emotional support. Sara saves all her magazines for me and Amy brings me chocolates and cuts my hair. I hope that, someday, the good days will outweigh the bad. I hope I will always feel this loved, because that’s what keeps me going. As they say in the film Transformers, ‘Hope for the best, but prepare for the worst’ – because at the end of every bad day, there is always tomorrow.
HOW TO HELP A FRIEND OR RELATIVE WITH A CHRONIC ILLNESS
Chronic illness often means isolation, frustration and, above all else, boredom. While you can’t take away a person’s pain, there are ways in which you can help.
● If the sufferer says they’re too unwell to come out to meet you, don’t offer a glib, ‘Hope you feel better soon’ — pop in to see them instead. This never occurred to my friends until I told them how isolated I felt. I’m often in too much pain to go out but a cup of tea and a gossip does wonders to lift my spirits.
● I struggle with housework but never ask for help. When my parents visit, Dad will mow the lawn or clean my car while Mum runs the Hoover round. If you pop by ‘for a chat’ and just happen to do something useful while you’re there, it’ll be much appreciated.
● If you’ve finished with a book or DVD, pass it on. Chronic illness often means little money.
● Pick up the phone. Tell them you’re thinking of them. Sometimes, it really is that simple.
HOW I HELP MYSELF
● I try not to sweat the small stuff. If the kitchen and bathroom are clean, the washing’s done and there’s food in the house, it’s not the end of the world if there’s a bit of dust.
● I find it very hard to relax, and rarely get more than two to three hours of sleep a night due to pain and a stressed state of mind. Gautier runs me a bubble bath once a week, or sends me to bed early with a good book to help me wind down — for his sanity and mine.
● I remind myself of the mad things I did before I became ill, such as in 1996 when I interviewed the Spice Girls for 90 Minutes football magazine. I showed Victoria a photo of David Beckham to see if she fancied him. She did. ‘Go to Old Trafford with Mel C and buy him a drink in the players’ lounge,’ I told her. ‘I’m going to ask him out for dinner!’ she exclaimed. A few weeks later they duly met in the players’ bar and the rest is history, but I never did get a wedding invitation, despite them both telling the story in their autobiographies. Pah!
● I’m devastated that I can’t dance any more, so I found myself a new interest — working my way through The Masterchef Cookbook. I feel a real sense of achievement when I come up with something fabulous for dinner, even if it’s just for the two of us.
Juliette’s blog is at juliettewills.wordpress.com
Data from: dailymail.co.uk