"I didn’t really sleep last night because I was pranging out so much about talking about this," laughs Alexa Chung down the phone to me from her home. "It’s weird how intimidating it is."
We’re not talking about money or sex, break-ups or breaking the law; none of the things that you might assume would keep a public figure up all night. To mark International Women’s Day and the 15th anniversary of the World Endometriosis Research Foundation, we’re due to talk about Alexa’s womb tissue. Specifically, the tissue similar to the lining of the womb which starts to grow in other places, such as the ovaries and fallopian tubes, causing sometimes acute pain and, for some, fertility issues. That’s right: Alexa Chung has endometriosis and she wants everyone to know about it. "It is something we should be talking about and I’m so happy to be in a position where I might effect change, or at least raise awareness," she says, her voice smooth and familiar. "But even saying that, it just feels so personal."
According to the World Endometriosis Research Foundation (WERF), endometriosis affects around one in 10 women but it takes an average of eight years to get diagnosed. That’s eight years of mysterious discomfort, sometimes heavy periods, sometimes bloating, sometimes difficulty getting pregnant. "I was diagnosed with a fairly advanced stage," explains Alexa, "but my symptoms aren’t as horrific as they can be for some people. It is a painful disease. It can be excruciating." Alexa had, as she describes it, "a gnawing, dull pain that just wouldn’t go away." It got worse and worse until, eventually, she was unable to stand for long periods of time. "It wasn’t that I woke up one day and couldn’t stand up but it escalated, so in those final weeks I was having to take all my meetings lying down. On the carpet. In front of my CEO." She likens it "to the end of Braveheart, where he’s been stretched on the rack. But that’s just me. I don’t know how it feels in other people’s bodies. And it really depends on where I am in my cycle."
How did it feel, I wonder, to finally have a name for this mysterious thing that was apparently twisting her body into a little prawn of pain and sadness? She laughs again. "I was relieved to get a diagnosis because my instinct was telling me that I had ovarian cancer. Never one to be dramatic, or anything! When I found out that it wasn’t that, I was actually relieved."
Looking back, she says there were probably signs years ago but these went unnoticed, simply because they weren’t consistent month to month. "I might have a really intense period, or years ago I went to the doctor to scan my kidneys because I thought there was something wrong with them. Endometriosis is nigh on impossible to diagnose without performing surgery, so you might not know you’ve got it. Which is why I want to talk about it. If other people are experiencing pain and read this, they might feel encouraged to go to the doctor."
Luckily – and we both laugh at the use of the word in this context – Alexa was able to have a laparoscopy, or keyhole surgery, which seems to have eased all her symptoms. "I posted a photo ages ago, when I was really high on the drugs they give you in hospital after surgery," she says, in a low, droll chuckle. "In fact, they warn you not to use social media until you’ve come off all the drugs, probably for that reason. But anyway, I posted this picture and was amazed by the number of people who commented underneath. Once you talk about it, so many people will share their experience of it with you."
A major issue for people with endometriosis is the possible effect the condition will have on your fertility. "One of the things they tell you when you get diagnosed is that you should have a baby because it will suppress the symptoms," says Alexa and I can almost hear her eye-roll down the line. "But ironically, one of the other things that can become quite difficult if you have endometriosis is having a baby. So, great, the thing that might cure me is also something I might not be able to do. Cool."
Alexa Chung is talking openly about her experience of having endometriosis precisely because so few people in the public eye have done so. "The reason I knew about it was because I read Lena Dunham’s account of her journey," she explains. "But there’s not that many people that talk about it, considering it’s one in 10 women." She pauses. "That means one in 10 famous women have it!" And so in collaboration with WERF, Alexa has designed a pair of T-shirts, in yellow and pink and emblazoned with the name Emmeline, for her label ALEXACHUNG, of which she is creative director. "I wanted it to be almost like band merch," she explains. "Emmeline is obviously a reference to Emmeline Pankhurst, the great suffragette of yesteryear, but could also be potentially a band name or an album." She wants to sell a lot of them, she explains, and raise more money for research into endometriosis, in order to improve diagnosis and develop effective treatments. Because all that takes money. And work.
Speaking of work, Alexa tells me that as a self-employed person, she was lucky to be able to take time out to go to all her appointments, attend the surgery and have all the scans and check-ups afterwards. "If you’re someone who is suffering from endometriosis and you need to ask your workplace for time off, that’s very hard if they’ve never heard of it." Imagine being able to stroll down the corridor to Julie in HR and explain that because of your endometriosis you’re going to have to take next Tuesday off, I say. Alexa laughs. "Yes! When it comes to menstrual pain in particular, perhaps women are still silencing themselves because they don’t want it to be a disadvantage in the workplace. It wasn’t that long ago that women in work didn’t want to be accused of being overemotional or hysterical. All those things that have been levelled at women for years."
After her sleepless night, I wonder if Alexa still feels on edge talking about her body in this way?
"I would always rather be making gags about it, to be honest," she admits, her voice a little quieter. "It makes me feel vulnerable and weird just saying it out loud and I don’t enjoy it. But I do want to talk about it. And you would be surprised how many other people you know have it."
Emmeline T-shirt, £75, exclusively at ALEXACHUNG and available to ship to Canada. 100% of profits will be donated to WERF to advance their invaluable work on endometriosis research.