Sydney student reveals battle with Crohn’s disease

At 21, student Lili Higgins has got the world at her feet. But her Instagram photos hide a difficult secret she now wants to share with the world.

A quick glance at Lili Higgins’ Instagram page and the 21-year-old looks like she has the world at her feet.

But for years, the beautiful Sydney university student had been keeping a painful secret from the outside world.

While you wouldn’t know it from looking at her Lili has been battling an invisible illness for nine years.

Lili was diagnosed with Crohn’s disease at just 12 after her mum noticed a drastic change in her appearance.

“I was 12 years old and I went away on holiday,” she told news.com.au.

“When I came back my mum didn’t say anything to me but later on she told me that she thought I wasn’t eating when I was away on holidays because I had lost so much weight.”

Crohn’s disease is an inflammatory bowel disease where the digestive tract becomes painfully swollen because the immune system wrongly attacks that part of the body.

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Lili Higgins was diagnosed with Crohn’s disease at 12. Picture: Instagram/@lilihigginss

Soon Lili began experiencing chronic stomach pain and as her grandmother has Crohn’s disease it put her family on high alert.
A trip to the emergency room resulted in tests which revealed Lili was “riddled” with the illness, something that was difficult at first to get her head around.

“Because I was so young initially I was really upset, because being diagnosed with anything can be really confronting,” she said.

“But I feel like because I was so young I was able to be resilient and bounce back from it.”

Throughout her teens Lili managed her Crohn’s disease as best she could, even if it meant faking it at parties.

“Everyone goes through that underage drinking thing and it’s really not good for anyone but for someone with Crohn’s it’s really something bad,” she said with a laugh.

“There were times I would even pretend to be drinking just so I could fit in.

“When you’re diagnosed with something you already feel like you’re alienated, so you kind of do everything you can to fit in and feel normal.”

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Having Crohn’s disease was sometimes alienating as a teenager for Lili. Picture: Instagram/@lilihigginss.

While people have often heard of Crohn’s disease or known someone that has it, Lili says it can be difficult for people to understand what the illness really means for those who live with it.

Those who have Crohn’s disease can also find it difficult to talk about the symptoms as they can often be “embarrassing” to explain to people.

“I feel like no-one really understands it unless you have the disease or you have someone that’s really close to you that has the disease, because most of the symptoms are internal. The only one that people could really see what that I’d lost weight,” she said.

“But because all the other symptoms of pain, fatigue and all that sort of stuff, people can’t see it, so they don’t understand.”

After finishing high school Lili enrolled in university to become a primary school teacher, excelling in her studies.

But when the coronavirus pandemic was declared in March, it had a devastating impact on Lili, triggering the worst Crohn’s flare up since she was first diagnosed almost a decade ago.

Lili manages her Crohn’s by taking immunosuppressants which helps decrease the rate at which cells in her stomach attack themselves.

However as a result, Lili’s immune system is lower than others, making her more vulnerable to coronavirus and worried about what could happen if she were to catch it.

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This year saw Lili battle her worst Crohn’s flare to date and end up in hospital. Picture: Instagram/@lilihigginss.

With stress a major trigger for Crohn’s flares, Lili saw her symptoms drastically worsen as the year went on and she was forced to take a leave of absence from university.

“At the start of the year I was getting high distinctions and I was getting some assignments back just before I left and was barely passing so it’s really affected me this year,” she said.

“Being on immunosuppressants and working in customer service it was really scary interacting with that many people, so I had to take leave from work as well.”

Lili’s symptoms got so bad she eventually ended up spending eight days in hospital earlier this month.

“I would get crippling, excruciating stomach pain where I couldn’t go see people, I had to just lay at home and watch movies … I started losing weight again, I’ve lost seven kilos since the end of July,” she said.

“The fatigue affects me all the time, even when I’m in remission I don’t have energy, but that worsened, really, really badly to the point that I was sleeping in the day, I don’t normally do that.”

Lili has decided to share her story so others can understand Crohn’s disease better. Picture: Instagram/@lilihigginss

Since leaving hospital and starting on a new medication, Lili is feeling better and made the decision to share her story publicly this week.

“It’s really only been since I got really sick that I’ve decided I want to spread the awareness because I lost my job, I’ve had to leave uni and people around me aren’t understanding why,” she said.

“I don’t want to not go to events, I don’t want to not see people, I don’t want to not work, I really want to finish my degree but I just physically can’t, and I feel people judge me for that.”

Lili’s wish is that by sharing her story others will understand that if people with Crohn’s like her can’t do something it’s not just because they’re “lazy” or “making excuses”.

She hopes too that those out there who have Crohn’s realise they aren’t alone in their fight and there’s help available.

“Reach out to your family, reach out to friends that you’re close with,” Lili said. “The more you talk about it, I realise, the easier it becomes.”