This TikTok star reveals what it's really like living with a chronic illness

‘One wrong move can risk your life’

Steph Kelly, an Aussie nurse and content creator, is taking the TikTok community by storm. Here’s why her story and zest for life have inspired so many.  

The top social media platforms of today do more than just entertain us during our long commute to the office, or deliver a steady stream of handpicked advertising content. Apps like TikTok and Instagram offer us a highly intimate glimpse into the everyday lives of other people. 

From ‘Get ready with me’ and ‘What I eat in a day’ videos to real-time interactions with a (sometimes enormous) community of likeminded followers, creators of every genre, age and background have taken to filming the often forgettable or hidden aspects of their lives, sharing them openly with the rest of the world. 

But 27-year-old creator Steph Kelly’s content doesn’t consist of carefully curated clips of her daily meals and snacks. In fact, the Sydney-based nurse has created quite a splash on the platform by sharing the very contradiction of that concept. Because Kelly hasn’t eaten anything in over four years. 

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The diagnosis that changed her life

In March 2018, on their way to celebrate a three-month stint of work without needing to take sick leave (Kelly has a preexisting heart condition), the nurse and her now husband were involved in a car crash. Initially not aware of the full extent of her injuries, Kelly was diagnosed with neck, ribcage, and shoulder injuries that required surgery. 

“About eight months after the accident, I was getting really bad stomach symptoms like vomiting and bloating, and they did a few tests and they said that my stomach wasn't emptying, and then that's why I was getting so sick,” Kelly explains. 

“I was also dropping a lot of weight because I wasn't getting any nutrition,” she adds sharing that she was fitted with several feeding tubes over the next year to nourish her body.

Then in 2020, Kelly’s body stopped tolerating the tube feeds and she was diagnosed with intestinal failure, prompting doctors to insist she go on Total Parenteral Nutrition (TPN), an intravenous administration of nutrition outside of the gastrointestinal tract. 

As a nurse, Kelly was initially reluctant to proceed, knowing the medical risks associated with such an intricate long-term procedure, “ Sometimes I wish that I just didn't know the details because that's what's a bit scary,” she says. 

Eventually, after a few hospital stints on TPN, the 27-year-old fully embraced the daily practice, finding her quality of life exponentially improved, “The year that I was avoiding the TPN because of the associated risks, I was not living because I was so unwell and malnourished and all that. Since then, I've been on it now for almost three years.

@stephkkelly

let me know if you have questions! I love answering them and I want to answer more when we are back next week! Love you all #honeymoon #wedding #fyp #chronicillness #centralline #totalparentalnurtrition #dailyroutine

♬ original sound - steph kelly

Steph’s routine on TPN

Regardless of how she’s feeling or what her plans are, she simply can’t afford to skip a night of TPN or ignore her condition. 

“I set up the TPN every evening– I have to run it for 12 hours, so I'm attached to either my IV pole or a backpack,” explains Kelly. “You kind of have to pay attention to everything because as it's so sterile, one wrong move can risk your life.”

As for her waking hours, Kelly tries to take advantage of the times she isn’t hospital-bound or stuck in appointments. “Some days I now make content for brands, which has been fun,” she says. “It's cool to be able to earn an income doing something that I didn't even expect to do.” 

And though the nurse herself no longer consumes her nutrition the old-fashioned way, she still very much enjoys cooking and grocery shopping for her husband and fur baby.

While she explains the intricacies of her daily medical routine, her dog Oatley makes his presence known in the background of the call. He, and of course, Kelly’s husband Adam (whom she married last June) are the crux of her support system.

Steph, her Husband Adam and their dog, Oatley. Image: Instagram/@stephkkelly

Using her platform to inspire and educate

Working as a nurse, Kelly says she routinely met parents of children on TPN or living with chronic illnesses and disabilities not often featured on a social platform like TikTok, usually desperate to provide their kids with relatable role models and representation. 

After posting a few videos in late 2022, the nurse (@stephkkelly) immediately received requests from curious viewers to continue sharing aspects of her life and illness. 

“To be able to relate and have an influencer who isn't gorgeous and has the best skincare, who just kind of gets on TikTok and goes, ‘Hey, I'm sitting at my table and I'm depressed,’, If I could be that, that'd be so cool,” she recalls thinking.

In just over a year, Kelly’s page has surpassed 350K followers on TikTok. Her videos and regular updates unveil the reality of living with TPN, challenging the doom and gloom of what most people associate with serious chronic illness. 

And that’s not to say much of her time isn’t spent in a hospital gown awaiting sombre news and tests– an aspect Kelly very much shares openly and honestly with her followers– but rather, her TikToks also include the mundane little tasks and moments of joy in everyday life most people probably forget to appreciate.

@stephkkelly

TPN + IV fluids bedtime routine! Enjoy the ASMR! #asmr #fyp #chronicillness #totalparenteralnutrition #tpn #peg #feedingtube #enteralnutrition #tubielife #grwm #nightroutine

♬ original sound - steph kelly

Her growing TikTok page not only inspires her followers daily but also helps Kelly cope with the difficult– and often scary– toll of her illness. Because despite her positive outlook and years of experience, Kelly and her husband still find themselves fearing the worst.  

“Last year where [my hospital stay] was four months and very much took a toll on everything– like, financially, our relationship,” Kelly says. “We bought some land that we were going to build on– we had to sell that. It was really hard. And also just so socially isolating.”

“The one thing that my husband and I will never get used to is the complications and stuff like that, like the amount of times that I'm so afraid of dying,” she adds. 

But ever the optimist, Kelly is grateful to not only have the opportunity to spread awareness about living with chronic illnesses but also that her followers have responded with curiosity and neverending support.

Originally published as This TikTok star reveals what it's really like living with a chronic illness