A Belle Vernon woman added a stunning visual in a viral TikTok video about her “invisible disease.”
Sydney Baciak was 16 and a junior at Belle Vernon Area High School when she started feeling symptoms of ulcerative colitis, a form of inflammatory bowel disease (IBD) with no cure.
She was active, taking part in cheerleading, track and other clubs, when in 2018, she started experiencing cramping, joint pain, fatigue. During increasingly frequent trips to the bathroom, she began seeing blood in the toilet.
“The blood really scared me, so I told my parents,” said Baciak, who is now 18.
She expected to make a trip to the doctor, get medication, and have the problem fixed.
“Hearing the doctor say there’s no cure was really scary,” she said. “It was very overwhelming to get the diagnosis.”
Although Baciak considers herself a very positive person, what followed tested her optimism.
First came the trials and errors of different medicines to help get her colitis under control. When those didn’t work, Baciak had to endure three surgeries, including one to remove her colon, resulting in her being fitted with an ostomy bag, which she wore for a year. A surgery in September removed it.
But in her time since the diagnosis, Baciak said the number of people who told her they have colitis or other IBD conditions came as a surprise to her.
“People just don’t share that,” she said. “That’s why they call it an invisible disease. From the outside, you can’t tell if someone has Crohn’s or colitis.”
Baciak believes it’s mainly embarrassment that prevents people from talking about the condition.
“People aren’t embarrassed to talk about diabetes, but they are when it comes to (gastrointestinal) symptoms.” she said. “I don’t think it should be like that.”
Baciak reached out to the Crohn’s and Colitis Foundation soon after she was diagnosed to help in the efforts to find a cure and help improve the quality of life for people with IBD diseases.
She wanted to help raise money with a 5K walk this year, but due to the COVID-19 pandemic, the race had to be rescheduled.
In August, she took her story to social media on the popular platform TikTok in a video titled “My Chronic Illness Does Not Define Me,” through her account, sydney_art
Baciak said she had the idea for the video after seeing a similar video during Pride Month that made an impression on her.
In the video, Baciak has the symptoms of colitis written all over her face and a familiar phrase, “U Don’t Look Sick,” written in red across her forehead. She wipes off all of the words and dances in a silver outfit with “IBD Warrior” written across her chest.
“It resonates with people,” Baciak said. “Just because you don’t see the illness, it doesn’t make it less valid.”
The video currently has about 1.7 million views.
“The response was overwhelmingly positive,” she said, not only from those in the IBD community, but from those with other types of invisible illnesses. “It really helps with people going through a similar situation, so I love that.”
A 2020 high school graduate, Baciak opted to hold off on college due the pandemic and concerns because of her recent surgeries. She’s taking time to decide what she hopes to do with her life.
Whatever she chooses, she knows her outlook will be one of positivity.
“Everything happens for a reason; I learned a lot and grew through all of that,” she said. “I know it’s a cliché, but I would never change anything I’ve gone through. My experiences have made me the person who I am today.”
For more information about Crohn’s and colitis, visit www.crohnscolitisfoundation.org/.