Model Michelle De Feo is hoping to fund much-needed treatment for the debilitating condition shared by Justin Bieber and Bella Hadid
“I was anxious and depressed,” says Michelle De Feo, “because I knew there was something in my body telling me (I was ill).” The Essex-based model would come to learn she had Lyme disease, an infection passed on by ticks, and something for which there’s no cure. “It’s almost the same as with cancer – you can get rid of it, but it can come back and resurface.”
The 28-year-old finally received her diagnosis five years ago, in 2015, after a prolonged search for what was going on with her body. “I was ill for about a year,” she explains, “and just knew something wasn’t right. I went to the GP to get my blood tested, but everything came back normal. The doctors couldn’t say what it was, and after ten hours in hospital, they finally said: ‘All these symptoms are probably in your head.’”
Having been almost constantly exhausted and dizzy for the past 12 months, the doctor’s dismissal and suggestion that she “try counselling” only served to exacerbate De Feo’s symptoms. “It really affected my mental health,” she says.
This is a sentiment echoed by multiple celebrities and cultural figures, from Bella Hadid to Justin Bieber, the latter of whom revealed he was suffering from Lyme disease in January this year. “While a lot of people kept saying Justin Bieber looks like shit, on meth,” he wrote on Instagram, “they failed to realise I’ve been recently diagnosed with Lyme disease.” According to TMZ, the singer was “battling extreme depression because he was suffering and no one knew what was wrong with him”.
Let down by doctors deriding her symptoms, De Feo decided to scrape enough money together to visit a private practice, where she was finally diagnosed with Lyme disease. But treatment is expensive, especially when you need intravenous antibiotics as well as oxygen to treat your condition. Utilising her skills as a model, De Feo decided to sell nudes as a way of raising money for her medical care. “I can’t do a nine to five job,” says De Feo, who is often bed-ridden because of her Lyme disease. “If I could work lying in bed, I would do it – but I can’t. (Selling nudes) is a good thing for anyone who hasn’t got another method of financial support to do, especially for those of us in pain all the time.”
De Feo uses Twitter and OnlyFans to sell her nudes, platforms where she openly states that she’s raising money for treatment. The model avoids Instagram because of its strict – and stigmatising – censorship rules regarding nudity and adult work. “(Censorship has) got out of hand on Instagram,” asserts De Feo. “Twitter can be used for anything, so I don’t know why Instagram is so strict about it.”
Sex workers and adult content creators have previously told Dazed about the struggles they’ve faced doing business online. Sex worker Aphrodite Aeria told Dazed last month that social media sites “are reducing (adult performers) to their genitals”, revealing that they are “harassed, ridiculed, and threatened” online for “choosing to flaunt and monetise” their sexuality. Aeira was one of the handful of sex workers – led by Kaylen Ward (AKA The Naked Philanthropist) – who sold their nudes to raise money for those affected by the Australian wildfires in January. Ward raised over $1 million (£767k) alone, with a number of other adult performers raising tens of thousands for charity. “I hope this important campaign shows that people in the adult industry can raise a lot of money in an unconventional way,” UK-based sex worker Barbie Roxxx told Dazed last month. “We all need support at some point in our lives – whoever we are or whatever our jobs are, we’re still human.” De Feo’s campaign maintains this same spirit. “Obviously you’re going to get negativity,” she says, “but my friends and the Lyme community have been really supportive.”
As well as raising money for her own treatment, De Feo hopes to raise awareness about Lyme disease more broadly. “I thought I could finally come out a little more about it and bring more attention to the condition,” she explains, adding that she believes a lack of education is the reason diagnoses take so long. “It’s so often misdiagnosed; they thought I had mental health issues or chronic fatigue syndrome. The only reason a lot of people get to their diagnosis is because they come forward and say, ‘I think I have Lyme disease’.” After finally being diagnosed, De Feo ended up developing endometriosis too. “Women affected by Lyme disease often end up getting endometriosis,” she explains, “because the Lyme inflames your body and organs, so it affects women in a completely different way.”
Symptoms of Lyme disease include a rash, high temperature, headaches, muscle and joint pain, and a loss of energy. “It was in the news a lot,” she explains, “and I remembered having a rash on my arm, so I thought: ‘You know what? I think I have this!’ That’s when I did a diagnostic test, and obviously it came back positive.”
“We ended up flying to the US after looking at different options,” she continued, “but didn’t know that treatment there was going to be cheaper. You’d think it would be a lot more expensive, but – believe it or not – it was actually so much better.” De Feo says treatment would cost around £15,000 in the UK, but just £3,000 in the US. She continues: “All I needed was ten days at a clinic that specialises in Lyme disease, then I came home with loads of medications. It was a different approach.”
“It’s so often misdiagnosed; they thought I had mental health issues or chronic fatigue syndrome” – Michelle De Feo
Once a keen horse rider, De Feo reveals she had to give it up completely after her diagnosis – a hobby also sacrificed by fellow Lyme disease-sufferer Hadid. “I just couldn’t care for the horses,” De Feo recalls, “because my muscles were too weak.” The model also had to give up her job as she couldn’t sustain the amount of travelling she was doing for work. Though stress, trauma, and a poor diet can aggravate the condition, De Feo says that treatment and detoxing help. “While I was staying in the US, I did start horse-riding again,” she tells Dazed, “because I thought, ‘I’m getting way stronger’, so I began riding occasionally. Hopefully with no relapsing, I should be able to get back there.” De Feo also attends counselling to help with her condition. “I really think that if you’re struggling, you need to speak to someone.”
Struggling with two debilitating illnesses has its difficulties, but De Feo remains positive and hopes that her new campaign will not only help with her own day-to-day life, but enhance public knowledge about Lyme disease and offer a beacon of hope for those who are undiagnosed and confused. “I’m being hopeful,” she affirms, revealing that she’s raised around £3,000 so far. “Sometimes you don’t feel listened to by doctors,” De Feo concludes, “so I’m really trying to spread more awareness (so less people have to suffer in the dark).”