Sharon the power of her voice

Voice. Whether it’s conveyed through social media or one’s vocal cords, junior Sharon Wang has learned to not neglect the power it holds. Wang — an ulcerative colitis (UC) patient — uses her voice to bring awareness to the inflammatory bowel disease (IBD) community, as well as inspire others with her story in a myriad of outlets.

Wang was diagnosed with UC — a type of IBD that causes long-term inflammation and ulcers in the digestive tract — in November 2019, following abnormal symptoms of diarrhea and bleeding in the stool. Months after her diagnosis, Wang is an avid influencer among the IBD community on TikTok, Instagram and YouTube.

“People were always very supportive [of influencers] and so, I decided that I shouldn’t keep my disease to myself anymore. I wanted to hopefully motivate other people and tell them that they can do anything [regardless of whether] they have a disease or not,” Wang said. “I got a lot of support from [social media] which helped me realize that a lot of people find these stories inspiring — I thought that was really great.”

Wang documents the nuances of her UC journey on YouTube, from hospitalization vlogs to fitness challenges and diet advice for IBD patients. Sharing occasional updates about her prognosis to her followers, Wang is also vocal on her Instagram page. But she’s reached an even more substantial audience after joining TikTok.

In one of Wang’s videos, she details her recovery after her first flare up. This video alone amassed over 21,000 views, over 100 comments from other IBD patients and direct messages from people all over the world. Two messages in particular stood out to her. One TikTok user from Romania, in the early stages of ulcerative colitis, sought and followed UC-specific diet and lifestyle advice from Wang. Another user Wang met online had undergone an identical treatment experience to her.

“I’ve learned that it’s really good when you’re struggling with something to be very open about it,” Wang said. “A lot of times when people are struggling with something they kind of want to keep it to themselves, whether they feel ashamed or embarrassed. But in reality, there might be people who are going through the same thing.”

Being open about her weaknesses hasn’t always been so easy. In fact, Wang recalls reaching her lowest point just a few months prior.

“I felt really frustrated and angry that medications given to me by my doctors weren’t helping. I constantly asked, ‘Why me?’” Wang said. “But I just kept it all to myself — I felt alone for the first time in my life.”

Although the medication from Wang’s first treatment plan helped to tentatively suppress the inflammation, the symptoms returned within two months in a sudden flare up.

“This disease can really affect your body because it’s constantly up and down — you never know when you might have a flare up,” Wang said. “I’ve reminded myself that I’m gonna have this disease for the rest of my life and there’s nothing to do about it because it’s an incurable disease. It’s hard to deal with that sometimes.”

After the flare up in March, Wang began her second treatment plan, in which she visited the hospital on a biweekly basis to receive an injection medication. Hospital visits and doctor’s appointments often interfered with school — her grades declined and she felt disconnected with friends. The treatment plan, which failed after a couple of infusions, only heightened Wang’s stress levels.

“Since I had really heavy classes, I was stressed over that [and] I hated missing school. When I was at school, I didn’t really talk about [my pain]; I was embarrassed because I felt like no one in the world could understand the pain and struggles I went through — normal people don’t talk about their bathroom trips, or seeing large amounts of blood in the toilet every single day,” Wang said. “All that blood loss made me really weak, so I wasn’t able to push myself as hard as I used to. It was very hard to stay hopeful.”

Wang — a former member of the Walnut Swim team — informed her swim coach that she was unable to continue swimming because of her prognosis. A result of the excessive blood loss, Wang had lost 11 pounds and felt chronically weak.

“My swim coach was very lenient and understanding of my situation. Ulcerative colitis was making swimming really hard,” Wang said. “Swim was also a major stress factor for me because I put a lot of pressure on myself to improve. It was just too much, and I kind of just thought it would be best for me to quit. My symptoms started improving a bit because swimming took a really big toll on my body.”

Following school closure, Wang’s condition improved as she adapted to distance learning. With the excess free time, she sought out ways in which she could further suppress the inflammation. Wang, a lifelong athlete, stayed active by participating in 30-day fitness challenges for her YouTube channel. Inspired by her father, an avid runner, she also began running on a more frequent basis.

“[My dad] would constantly wake up at four to run every single day, and he was a really good runner, so I was like, ‘if he can do it I can do it, too,’” Wang said. “I wanted to prove to myself that I was capable and also motivate other kids to get out and get moving because it was quarantine.”

Additionally, Wang started following a Specific Carbohydrate Diet — a restrictive and grain-free diet plan designed to help people with bowel diseases. Along with grain, she cut out dairy and junk food from her diet.

“At first it was really really hard for me, because I would have food withdrawals. When I eat with my family you know obviously they’re eating stuff that I used to eat. And then I still crave that food,” Wang said. “Sometimes it will make me upset, but I’ve learned [that] with so many months, you just have to accept it and to be very grateful for the foods I can eat.”

Wang experienced a flare up in her colon during July, in which she was hospitalized for five days. In a time when she was physically at her lowest, the pain was most subdued with the support of her inner circle.

“[My friendships] definitely deepened, as there were some friends that supported me through the process,” Wang said. “[Being hospitalized] helped me realize that these friends are really important to me.”

Wang also formed a stronger connection with her mother, whose patience she admired. With each of her doctor’s appointments, blood withdrawals and flare ups, her mother was there to assist selflessly.

“Whenever I had to do stool samples — it’s usually a really gross thing — she would be the one to put on the gloves and take it to the lab. She won’t tell you if she’s hungry or tired, she’ll ignore it and put you first,” Wang said. “[My mom has] allowed me to realize that I can be very open about anything with her. She understands the struggles I go through because she’s seen everything.”

Although Wang has always been religious, she believes her diagnosis strengthened her faith. She studied the Bible during her hospitalization in July, journaling prayers and sermons in hopes for remission. In addition, praying for her health had become a norm during her family dinners.

“My faith has always been really important to me, especially during those unknown times where I don’t know if I’m going to be better,” Wang said. “My motto, ‘faith is greater than fear’, is to really have faith and hope, because that’s really important when you don’t really have anything else.”

Believing it to be a miracle from God, Wang regained enough strength to leave the hospital in a shorter amount of time than doctors had anticipated. Wang — in the process of her third treatment — has not had another major flare up since.

“After I started my next treatment, I felt a spark of hope,” Wang said. “I started telling some of my friends about it, and it really helped because a lot of them were really understanding. Talking to people allowed me to have an outlet to express my pain and my sorrow.”

Wang has plans to continue reaching thousands at a time with her voice. To her, vulnerability isn’t a sign of weakness, but a symbol of strength and tenacity.

“Remember how I said when I was first diagnosed, I felt alone? After sharing my story to everyone, I felt liberated, free, and happy,” Wang said. “I finally wasn’t disassociating from everyone and I felt included in the IBD community, even though UC makes me different from my peers. In the end, we are all united in our struggles, whatever it may be.”

By Emily Cao, Feature Editor
Photo by Annika Le

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