I was recently asked by the Cambridge Lupus UK chairwoman to 'talk to the press', so last week, over a luscious mug of crème brûlée latte, I was interviewed by the editor of the Cambridgeshire Journal for the local newspaper. A very lovely Cambridge English graduate herself, Alice Ryan put together the following piece...
In the Shadow of the Wolf
Shaista is one of thousands of people in the UK battling lupus – a vicious disease in which sufferers are attacked, without warning, by their own immune system.
SHAISTA Tayabali appears to have it all. Petite, pretty and fiercely bright – she has a first class degree already under her belt, and has just begun an MA – the Cambridge girl seems to lead a charmed life.
In fact, behind the smiling public face, nothing could be further from the truth. Although it wasn’t diagnosed until her late teens, Shaista has battled a vicious and ever-changing autoimmune disease – lupus – since she was a little girl.
Constantly in and out of hospital, she has fought high fevers and unbearable pain, almost lost her eyesight and twice come close to death.
She has taken innumerable tablets and suffered all manner of side-effects, from vomiting to hallucinations.
In short, she’s been to hell and back.
“Angry? Are you kidding? Yes, I’ve been angry. At times I’ve been angry like I could put my fist through a window . . . but I’m not so angry any more.
“Lupus is Latin for wolf. From the moment you’re diagnosed, there’s this kind of metaphor you have to take on: it’s as though you’re living with a dark, shadowy creature that can attack you any time, with no warning at all.
“What I’ve realised, over the years, is that you have to find a way to distinguish yourself from all of that – to remember who you truly are.”
Affecting more than 30,000 people in the UK alone, lupus is thought to be more common than leukaemia, multiple sclerosis and muscular dystrophy worldwide – yet most people don’t even know it exists.
Far more common in women – 90 per cent of those affected are female – it is an autoimmune condition. Described in simple terms as a ’self-allergy’, lupus causes the immune system to produce antibodies which, rather than protecting the body from bacteria and viruses, attack the body’s own tissues.
Lupus can affect any part of the body, any time. As a result, the symptoms are characteristically wide-ranging: pain, fatigue, raging fevers, eye problems, kidney problems . . . the list is seemingly endless.
Currently there is no single test to confirm a patient has lupus – and there is also no cure.
“The reason I’m doing this interview is to raise awareness,” explains Shaista. “It’s an invisible illness: looking at me from the outside, you can’t see that anything’s wrong.
“And no-one’s really heard of it. I’ve had people say ’At least you don’t have Aids or cancer’ and that’s true, I don’t. But, because they haven’t heard of lupus, they don’t seem to take it seriously.
“When people say things like ’Just have fun!’ or ’Can’t you just shrug it off and be normal?’ . . . that ignorance is hard to cope with. I don’t want people’s pity, but I do want their respect.”
Shaista now knows she has had lupus all her life; her mother suffered from various unexplained allergies during her pregnancy, considered an early sign of the disease.
“The first time I ever really had symptoms was when I was about 9; they are usually triggered around the onset of puberty. My family lived in Bombay then. I started to get these mouth ulcers: 10, 12, 15 at a time – great painful pits inside my mouth and throat.”
Doctors diagnosed a vitamin deficiency, so Shaista was prescribed a course of vitamin injections.
All seemed well until, around the age of 11, she was struck down by what she now recognises as a classic lupus ’flare-up’: swollen glands, swollen joints, sky-high temperature. Thanks to antibiotics, the symptoms abated and, again, Shaista’s health returned to an even keel.
When Shaista was 15, her family decided to relocate to Cambridge. “There were riots in Bombay at that time; there was a lot of political unrest,” she explains. “I was just at the point where you have your own friends, you’re finding your own identity . . . and then we moved. It was pretty devastating, to be honest.
“I remember coming here and it being so cold and dark! Every year, around this time, I get deja vu.”
Going on to study first at Sawston and then Hill’s Road, Shaista excelled academically and soon made friends. But, on returning from a holiday to India at 17, she was again felled by a bout of illness – including another uncontrollable fever.
Taken into Addenbrooke’s, blood tests showed something was seriously awry. Eventually, Shaista was given a diagnosis: lupus. “I’d never heard of it. I was told to carry on as normal – go off to university, as planned – and just take these medications. Of course, when I got home I Googled it. One of the first things I read is there’s no cure, which was pretty horrible.”
Taking up a place at York, reading English Literature, Shaista was given a tablet usually used for anti-malarial purposes. Being hyper-sensitive to drugs – another symptom of the lupus – she experienced terrifying side-effects, including hallucinations.
“I tried to get to class once, but I spent the rest of the time in bed. I was so ill . . . it’s a very, very painful disease. It’s a down-to-the-bone kind of pain. And the fatigue is not something you can really describe. I was having these hallucinations, seeing horrible things.”
Returning to Cambridge, and in Addenbrooke’s once more, Shaista’s condition deteriorated still further. “The doctors told my parents to prepare themselves. They said ’We can do no more’ . . . I could have died. My body stopped responding to anything.
“The fevers go on and on and eventually, because you’re so dehydrated, everything just starts to shut down.”
Gradually – she was in hospital for almost two months – Shaista rallied. But it was then doctors noticed serious problems with her eyes: glaucoma.
“I almost went blind,” she continues. “Over the years I’ve had so, so many eye operations. The last one included a scleral graft, using donor tissue, which is really quite rare. That was painful and scary – but nothing like as frightening as the thought of going blind.
“After the operation I developed an ulcer on my cornea. Out of everything, that was the absolute worst. I just wanted to die. I begged and begged and begged: I said ’I’d be great as an angel. Please let me out of this body’. But that didn’t happen. And, somehow, I did get better.”
Despite her ill health, Shaista was determined to do a degree. Her ambition was to study at Cambridge University but, because of her illness, she had to give up her place at Newnham. Instead, she opted for a part-time course at Anglia Ruskin, spread over four years.
“I spent most of my time in bed with a high fever,” says Shaista. “By then I was on a chemo drug – I was on it for nine years. Lupus patients are treated with a lot of drugs originally designed for another disease; there aren’t many specialised medications.
“It made me really sick. Sometimes I just couldn’t keep food down, so I got really thin. I had vasculitis in my fingers and I’d been diagnosed with fibromyalgia too. But I was determined to get a first, that something good would come out of it. And, after four years of work, I did graduate with a first.”
Shaista, who has just embarked on a creative writing MA, says keeping journals and penning poetry has helped her cope. “I have hundreds of journals. It helps me to know that what I’m writing down is real. It’s the only way for me to stay sane!”
Latterly, Shaista has also been writing a blog – www.lupusinflight.com – which now has followers across the globe. And she also plans to publish a memoir in the future.
During her university years, Shaista lost a relationship to her illness too: “It didn’t stand a chance; he couldn’t deal with the illness. I don’t even pursue relationships now. It would take something extraordinary – someone extraordinary.”
Shaista spent the year after her graduation tutoring GCSE and A-level candidates. But then, yet again, her health nose-dived, and she ended up in hospital for three months. Again it reached the stage where the doctors could do no more.
“By then I was 30 and I thought ’Either I’m going to stay to really stay, or I’m going’.”
Requesting immunoglobulin treatment – essentially a dose of good antibodies, which she’d had once before in her teens – Shaista turned a corner. Once well enough to go home, she began lobbying for monoclonal antibody treatment: periodic infusions used to stimulate the immune system.
“I wrote the Primary Care Trust a very emotional letter. This treatment is expensive, but it’s life-changing. I’ve been having it for the last two years and I haven’t got vasculitis, I haven’t had any high fevers, I’ve been able to start my MA. If you added up the cost of my various hospital stays and all the other treatment I was having before, I think it’s well worth it.
“I went to Addenbrooke’s for an infusion this week and I was walking around with a big, stupid grin on my face: this treatment has totally changed my life.”
Shaista says her battle with lupus has put an enormous strain not only on her, but her whole family – especially her mother. “To see your child getting ill time after time – and not being able to do anything – has been pretty horrendous.”
Taking up meditation, Shaista says she’s learned to live in the moment instead of worrying what the future holds. “I’m in my 30s and my friends are getting married and having babies; I don’t know how I’d cope with all that – I’m still very fragile.
“But I am getting on with my life and enjoying it. For me, writing is a big part of that. You have to find a way to laugh, a way to be happy – a way to remember yourself.”
By Alice Ryan