‘Giving Myself A Lanvin Top Knot Became A Reason To Get Out Of Bed’

Thought fashion was just about pretty clothes? For ME sufferer Jenny Brownlees it was more like a life saviour


by Pandora Sykes |
Published on

I knew I loved clothes aged six, when my favourite pink ‘Absolutely Fabulous’ T-shirt shrunk in the wash. I was devastated. Would I ever find another top that summed up my whole being? I feared not. After tee-gate, my fate – a career in fashion - seemed sealed. But little did I know that I wouldn’t continue to study my beloved Textiles after AS Level, I wouldn’t go to university like my peers and I wouldn’t get a graduate job in fashion, or even a job at all. In fact, I wouldn’t be anywhere near the stylish industry I’d dreamt about.

Because when I was 17 I was diagnosed with ME/CIFS – six controversial letters which still send shivers down my spine. Myalgic Encephalomyelitis or Chronic Fatigue Immune Dysfunction Syndrome; try saying that after a glass of wine. No one seems to know why the feeling of being in a chronically fatigued state happens to some people, although I had previously suffered a bad bout of glandular fever. One day I was fine, the next I couldn’t move. It was* that* sudden. I was exhausted but unable to sleep, so weak, disorientated and dizzy, sick, and in constant pain, I struggled to complete the most basic of tasks. I weighed only 8 stone, despite my 5”9 frame.

‘So, what can we do?’ I remember asking the doctor - not knowing at that point that doctors are still arguing over whether or not ME even exists. ‘Nothing, you’ll have it forever, here’s a leaflet. Goodbye,’ was his not so helpful reply. For 18 months, no-one knew what was wrong with me. I wasn’t ‘ill enough’ to be in hospital, but I'd seen every GP in my surgery and no one had a clue what to do. Did I hate school? They all asked. Was I having trouble with my boyfriend? Was I secretly anorexic? In the hospital, I had no department to fit into, I didn't belong in neurology… cardiology… I was nothing.

I reverted back to a child-like state. At a time when I was meant to be asserting independence my parents were cutting up my food for me. My body, once fit enough to compete in county championship running competitions, was ruined. The effect on my cognitive abilities hit me hard. I couldn’t read. Music pierced my ears. Even daylight was painful. What ensued over the next six and a bit years – a sickening merry-go-round which went on and on – is something I do want to write about in depth. One day. Right now it’s still too hard, to soon, to raw. So, instead, I’m going to tell you the unlikely companion that accompanied me. Fashion.

When moving house my step-dad asked if I should get rid of some of my rubbish. 'What rubbish?’ I replied, looking around at my towers of collected magazines. ‘I need them’ I said. And I did. I would wait eagerly for magazine subscriptions – an escape from the imprisonment of my life - as something to get up for when there was nothing to get up for. I even recognized the sound of a magazine hitting the doormat. I needed those magazines. I was sick of being sick. Sick of looking sick. Were my pyjamas my clothes, or my clothes my pyjamas? They had morphed into the same thing (hell for a girl who loves tailoring.) No, I wasn’t channeling the trend for wet look hair; too weak to shower my hair – the blonde long grown out - had a lovely coat of grease. It’s a shame the ombre trend came about in 2012; I was really rocking it mid 2007.

I decided Maison Martin Margiela’s silver hospital bracelet should surely be mine, a conciliation prize for the numerous plastic ones that had adorned my wrist on every hospital visit

I couldn’t be further from the well turned-out, polished fashionistas I saw on Style.com - lying in my sickbed, at my parents’ house in Newcastle – but fashion became my saviour. Psychologically it made me forget that I was the ill girl - I could pretend I was just a normal girl in a great dress. I put all the energy I had into perfecting a Lanvin runway-inspired topknot when visiting hospital; was told I was ‘obviously depressed’ because I wore all black to a psychologist appointment. Well excuse me for channeling Celine’s modern minimalism. I decided Maison Martin Margiela’s silver hospital bracelet should surely be mine, a conciliation prize for the numerous plastic ones that had adorned my wrist on every hospital visit. Christian Louboutin’s pill clutch, meanwhile, just about held all my pills. A Chanel temporary tattoo became my armour. Forget the dragon, I was the Girl with the Chanel tattoo.

Six years on I’m beginning to learn how to cope with my illness. The feeling of fashion as my armour remains (ironically, the pyjama-esque look became a trend just as I was beginning to get out of mine.) Still now, if I’m having a bad day, an extra bright pink lip can serve as a welcome distraction from lurking symptoms. Last year, my boyfriend (who stuck by me for the entire seven years) and I went on our first ever holiday. It overwhelmed me. Suddenly I wasn’t 16, blonde and a size 10 but 24, brunette, let's face it slightly chubby, with no degree and no idea what the hell to do with my life. But, hell at least I was able to physically shop again (online shopping isn't that fun when it's your only option). With no money and a lot of private medical debt, it wasn’t about buying, per se - just being able to wander the shops looking at the clothes, or helping friends shop, was a treat. Even if I was popping 100 pills just to keep me upright, being well enough to wear my new LBD to that party of Friday was something to aim for.

And that current trend for crop tops? I’m like hey, I've fought off M.E. - I think we can make this happen! The road ahead may be long, but at least I can strut down it.

Follow Jenny on Twitter @jennybrownlees

Picture: Eylul Aslan

This article originally appeared on The Debrief.

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