The problem that no one talks about

My editor, briefing me for the interview, remembered interviewing Levine for the JC back in the 1980s, and being struck by her immense glamour and charm. Well, nothing has changed.

But back then, Levine was being interviewed about her portraits of celebrities — she’s photographed everyone from Princess Diana to Moshe Dayan. This time I am here to talk about her latest book, which is a far cry from her normal glossy, coffee-table style. Let’s Talk About Lymphoedema has no pretty pictures, and Levine herself calls it “ugly” .

It is a very personal book about her struggle with the chronic condition which causes swelling in the body’s tissues and she hopes it will be a guide for others on how to cope.

“I was diagnosed with lymphoedema after I had my lymph nodes in my right arm removed when I had breast cancer.” She was diagnosed with cancer in 2010, and has otherwise made a full recovery.

It’s estimated that around 140 million people worldwide have the condition, and it affects approximately one in five women after breast cancer treatment.

“I had no idea what it was. None,” she says, “I looked for a book about it and I couldn’t find one. So I decided I would write my own.”

Levine, dressed simply in black leggings and a matching fleece, slips off into the kitchen leaving me in her living room. She returns carrying a tea tray with a dainty tea set, and a plate of pastries. “I have to have my coffee, but I don’t usually have these,” she says, helping herself to a Danish. “You’re making me spoil myself.”

“Everything in my career has been about capturing people at their best and here I am now, capturing people at their worst,” she says lifting her right sleeve to reveal a flesh coloured bandage.

She has to wear it to keep her arm from swelling to an unmanageable size.

“I can’t wear T-shirts any more,” she explains. “It is ugly and people wear clothes to cover it up. My right arm is very heavy and it feels like a brick. Nobody talks about having lymphoedema and people brush it under the carpet. People don’t want to see it.

“It has totally changed my life.”

In the book she and lymphoedema expert Professor Peter Mortimer of St George’s University Hospital explain the ways in which the condition makes it hard for sufferers to live a normal life.

“I was told it was easier to get an audience with the Queen than Mr Mortimer,” she boasts, “but it is my personality — I’m curious.”

The book chronicles the personal stories of other sufferers accompanied with images taken by Levine, such as 16-year-old Arabella, who has lymphoedema in her entire body, and the story of a man suffering from the condition in India, where it is even harder to get treatment.

“It is heart-breaking to hear some of the stories, like Tanya for example,” she says, using her iPad to show me a picture of a young girl.

At first glance Tanya’s portrait looks like any of the film stars’ that Levine has captured before, but a full length photo reveals a different story.

One of her legs is five times the size of the other, and covered in red blotches. Her foot is so swollen she can’t wear normal shoes.

“Look at her lovely face — you would never imagine that girl has this condition. You live with it and these little children make the most of their lives.”

Due to her condition Levine is unable to use her usual cameras to take photos.

But she is not the type of person to give up, and has taken photos for the book using different technology.

“I have given away my Hasselblad, but I told Apple about my predicament and they gave me my iPhone and iPad and everything I do now is on there.”

She says: “The photograph of the man in India was done not by me going there.

“I sat on Facetime and half an hour later I had a whole load of photographs.

“I directed the patient, and the guy in the room snapped when I said snap.

“I might be semi-disabled but I’m still doing what I love.”

Levine says the hardest thing about her condition is not being able to fly. “I can’t go on a plane for more than three hours. I don’t go to Israel.

“I remember going through security and the ordeal that was. I can’t psychologically and I can’t physically.”

Levine recalls a time when a tiny prick to her finger meant she was rushed to hospital — a down side to having her lymph nodes removed is that her body is no good at fighting infection.

“It terrifies me. I wear gloves now to do the smallest thing.

“The tiniest of cuts could lead to a life threatening infection.

“These are things people just don’t know about.”

Levine, who has more than 20 books to her credit, says it’s her chutzpah that gained her unprecedented access to some of the world’s most famous faces.

Her first books were about the sculptor Henry Moore, whom she describes as her mentor; then, starting with her pictures of Moshe Dayan, she worked on books on Israel before becoming best known as a portrait photographer of celebrities.

That’s why this book’s first pages have testimonies from Dame Judi Dench to emeritus Chief Rabbi Lord Sacks, all endorsing her efforts to raise awareness about the condition.

Only Richard Branson’s PA evaded her powers of persuasion.

“I was on to her for two months and I didn’t get anything but that is because she is not a good PA,” she snipes.

“I know Richard.”

“Judi Dench wrote me a very nice piece. She said ‘I’m sorry I can’t come to the opening but I would like to raise awareness through my work.’”

There is another celebrity friend who Levine wishes she had got in touch with.

She casually swipes through her iPad until she arrives at a selfie of her and the actor George Clooney.

“See, isn’t he gorgeous? He is just lovely, this was us on holiday, and we had such a lovely time. I would have loved to get in touch with him.”

Who took her portrait for the book, I ask, as she clears away the teacups.

“Me? Oh no, I hate, hate, hate, having my picture taken. I’ve sent you in a selfie instead.

“I think they are great.”

 

Let's Talk Lymphoedema is published by Elliott and Thompson (£15)