Sandy's passion for fashion

“Becoming disabled changes your identity,” writer Sandy Sulaiman tells Lara Masters. “I’m a great advocate of using image to boost self-esteem and manipulate the reactions of others”

I was a successful freelance journalist working for the Guardian’s women’s page, the Independent and some women’s mags. I trained as a fashion journalist at the London College of Fashion and freelanced for Fashion Weekly but also branched out into social affairs, writing on everything from property to travel for the Independent on Sunday.

Then ten years ago I was diagnosed with Huntington’s disease. It’s a hereditary terminal illness with no cure at present. It affects my mobility, swallowing and speech. The symptoms can include involuntary movements (which I have), depression (which I try not to have) and memory loss (although my long-term memory is actually better than my husband’s: I’m always telling him things he’s forgotten).

Huntington’s is the kind of “in-your-face” disease that makes people stare. I’m stared at all the time when I go out because I look drunk when I walk. I also find it hard to talk; the disease affects the muscles and nerves that make speech, so I sometimes sound slurred and it can be hard to hold a conversation, so how I dress and do my hair becomes more important as a way to express myself and who I am.

Fashion is now the one thing I feel I can have a say in! As my disease progresses I need more and more help yet the clothes I choose say something individual about me and help underline my uniqueness in an environment where it can seem to get lost.”

Lara says: I share Sandy’s sentiments entirely. Having a degenerative, wasting condition that I feel negates my femininity compels me to accentuate any remaining curves, curl my hair to create more “body” and make up my eyes and lips to say “I’m a woman!”

I also invest more in my appearance as my condition proceeds. As Sandy says, it’s an exercise in empowerment at those times when it feels as if the disability is closing in and taking over.

When you have a disability or terminal illness, it’s easy to feel swamped by it. Fashion really does uplift. It helps me to feel good about myself. I like thinking about what I’m going to wear. It gives me something positive to focus on.

Sandy adds: Before having a disability I was more conservative, though I‘ve always used fashion as a personal statement. Now, I’m more brash and less bothered by what people may think.

I was never really a punk, for example, but now retro has brought punk styles back, I find I dress more that way sometimes. I guess it’s a kind of rebellion, saying “If you’re going to stare, here’s a good reason to".

Wearing red zebra-print drainpipes and purple tiger-print loafers along with my punky bleached-blond hair encourages a more positive kind of stare. At least people are looking at me as a creative woman because of my bright and eclectic wear and not simply at the results of my disease.