Sofia Maughan, 26, says her illness also causes arthritis, poor circulation, eye sensitivity and brain fog – and affects everything from her work to her love life
A young woman with Crohn’s is using TikTok to raise awareness of the disease after highlighting a lack of support for young people with chronic illnesses – and lamenting that they are being forced to turn to strangers online for help.
Sofia Maughan, 26, was diagnosed with Crohn’s disease about five years ago. The first sign that something was wrong was when her bowels “pretty much just went crazy” and she found herself having to go to the toilet constantly – sometimes more than 35 times a day.
“That was step one, then the pain came. Which was like waves and waves of severe camping,” she said. “Then blood started to come as well.”
After getting tested, Sofia was told that her inflammation markers were seven times what they should have been and she was booked in for a colonoscopy, which she said was “traumatic”.
More than 500,000 people have Crohn’s or colitis – types of inflammatory bowel disease – in the UK. It affects about 1 in every 123 people. Crohn’s is a long-term condition where part of your gut becomes inflamed, and while it cannot be cured, there are treatments to help manage the symptoms.
Despite the fact that more than half a million people in the UK have Crohn’s or colitis, Sofia said the support on offer is severely lacking. “I received pretty much no help with it. You get a pamphlet and a couple of leaflets but it can only help so much.”
She uses her platform to raise awareness of the lesser known effects of Crohn’s – like joint pain and circulation issues. At one point, Sofia said her legs “looked like they were bruised everywhere” from poor circulation, and she deals with arthritis in her knees and hips when she gets a flare-up.
Her eyes have also been affected during a bad flare up, with Sofia saying: “I had to wear sunglasses when I’d go into a flare because I couldn’t deal with the sunlight. It felt like my entire body was just broken. The inflammation was just hammering me.”
Another effect people may not associate with Crohn’s is brain fog. “I can’t think, I am short of memory to the point I have to constantly write things down. There are some days where I don’t trust myself to drive. It is like having a fog in your brain, you don’t recognise yourself,” she said.
Sharing her experiences with Crohn’s on social media has resulted in Sofia gaining more than 658,000 likes on TikTok, on her page @sofiamaughan. She explained: “Every single Crohn’s video has either blown up or had a lot of engagement. I think that shows how desperate people are for help – they’re relying on a stranger on TikTok.”
She added: “The amount of girls – it’s heart-breaking – asking for help saying their doctors aren’t helping is the reason why I’ve continued. I want to spread the word – you’re not doing it alone.”
One area that has been particularly difficult for Sofia to manage alongside her illness is work. “I ended up with chronic fatigue and those two linked together meant I would wake up some days and couldn’t get out of bed. I would have to call in sick. My job now is very understanding, but some of my other jobs, they would just fire me,” she said.
Sofia now works as an estate agent, but has lost jobs as a waitress due to Crohn’s. “They don’t care that you’re sick, they just care about someone turning up, so I have lost a couple of jobs. That has been the hardest thing, feeling like liability,” she said. “It can be quite tough, it can make you doubt yourself a lot, when in reality you didn’t choose to have an illness.”
And while Sofia’s friends were understanding when she first became sick, dating is an entirely different story. She has been ghosted by men, who she says “didn’t understand” her illness, or that she couldn’t eat certain foods on dates. “It’s not the best scenario, dating with Crohn’s,” she admitted. Ultimately, by opening up about how Crohn’s impacts her, she hopes others in a similar boat will realise they aren’t alone.