What happens when it takes nearly dying for your symptoms to be taken seriously?
In Episode 3 of the Unfiltered podcast, host Tiffany Whitlow sits down with advocate and creator Victoria Tyler to explore her 20-year journey with ulcerative colitis (UC). Victoria walks listeners through missed warning signs, years of misdiagnosis, medical gaslighting, and the long road from scared patient to outspoken advocate. Along the way, she sheds light on what it means to live with an “invisible” illness in the Black community and how social media became a tool for survival, education, and connection.
A Village Behind the Mic
Before they get into medicine and diagnosis, Tiffany opens with something more familiar: family.
She and Victoria talk about blended families and modern co-parenting, from “bonus daughters” to exes who now function as teammates. Tiffany describes how she and her husband’s ex-wife learned to put “adult drama” aside and work as a united front for their children.
For Victoria, that sense of village and shared responsibility is deeply relatable. It also sets the backdrop for the rest of the conversation. When chronic illness enters the picture, the support system around you can shape how you cope, how you advocate, and how you keep going.
Understanding Ulcerative Colitis
When Tiffany asks Victoria to explain ulcerative colitis for the NOWINCLUDED community, she starts with the basics.
Ulcerative colitis, or UC, is an inflammatory bowel disease that affects the large intestine. In Victoria’s case, her entire colon was involved. She describes bleeding ulcers that led to frequent trips to the bathroom, blood in her stool, nausea, vomiting, weight loss, joint pain, skin rashes, and hair loss.
Those symptoms didn’t appear overnight. They began in adolescence. At 16, she saw blood in her stool for the first time. She didn’t tell anyone. She didn’t know she should.
“We don’t talk about what happens in the bathroom”, she says. She didn’t know what a normal stool should look like or how many times a day she should be going. Without that basic body literacy, she didn’t recognize it as a warning sign.
When she finally did tell a doctor, she was told it was “just hemorrhoids” and that it would go away. It didn’t.
“There’s No Way You Can Have Ulcerative Colitis”
As the bleeding continued and her symptoms worsened, Victoria began doing her own research. She bought a medical reference manual, looked up her symptoms, and narrowed it down to two likely conditions: Crohn’s disease or ulcerative colitis.
She went back to her primary care physician and said, “I think I’ve got UC”.
His response was blunt and infuriating: “There’s no way you can have ulcerative colitis. It only affects white Jewish men”.
That sentence reveals the bias and outdated thinking that still shape who gets taken seriously and who does not. Tiffany notes that many NOWINCLUDED community members report being told similar things: that certain diseases “don’t happen” to Black people or that they are “too young” or “too healthy looking” to be truly sick.
In Victoria’s case, the result was years of untreated disease. The blood in her stool went from occasional to constant. She went from noticing symptoms every few weeks to going to the bathroom more than 30 times a day.
Seven Days in the Bathroom
The turning point came when Victoria was 21, living in Atlanta and modeling. She developed what she thought was a prolonged stomach ache. A few days off work turned into a week of unrelenting pain and diarrhea.
She describes going into the bathroom, propping a pillow on the wall, and sitting on the toilet for seven days straight.
She couldn’t eat or drink. When she tried to stand, she fainted from blood loss and dehydration.
“I went into the bathroom at 130 pounds”, she says. “When I crawled out, I was 98.”
By that point, she had already cycled through emergency rooms and different doctors. She was mentally and physically exhausted. She told her mother to make funeral arrangements.
Only then did a doctor finally say, “You might have UC,” order a colonoscopy, and confirm severe ulcerative colitis involving her entire large intestine.
Treatment, Side Effects, and a Body She No Longer Recognized
Diagnosis did not bring a quick fix.
Victoria started the standard medications used to treat ulcerative colitis. She lists them by name: Humira, Remicade, 6-MP, prednisone, Stelara, even chemotherapy. None of them brought her into remission.
“For a long time I said, ‘I failed those medications, she explains. “I had to shift my mindset. Those medications failed me.”
She spent most of her adult life in and out of hospitals and infusion centers, often seeing multiple specialists who did not feel like a cohesive team. She recalls being handed new prescriptions without meaningful discussion about diet, stress, or life outside the clinic.
Meanwhile, the disease and the treatments took a significant physical and emotional toll. Steroids like prednisone caused swelling and weight gain. Flares left her emaciated. Her weight swung from 98 pounds to over 200 pounds more than once.
“There were many times I looked in the mirror and didn’t recognize myself”, she says. It took years to move from seeing herself only as a patient to seeing herself as a survivor.
Chronic Illness and the Family That Watches It All
Ulcerative colitis affected more than Victoria’s body. It shaped her children’s lives too. Her kids grew up visiting her in hospitals, infusion centers, and exam rooms. Where many children feel anxiety walking into a hospital, hers feel comfort and familiarity.
Her daughter, now heading to Prairie View A&M University to study psychology, was giving Victoria injections at just nine years old. Victoria wonders aloud what it must have been like for them to watch her weight fluctuate, see her admitted again and again, and learn what chronic illness looks like long before their peers.
That reality is part of why she now spends so much of her time advocating for better care and earlier recognition of symptoms.
From “I Won’t Make It to 30” to Advocate and Creator
For years, Victoria did not believe she would live to see 30. Her illness felt so advanced and relentless that she quietly accepted a limited future.
What she never expected was to eventually stand on the other side of that fear sharing her story, lobbying Congress, and encouraging others to push for answers.
“I never thought I’d be on the advocacy side of my journey,” she admits. “But it’s the most fulfilling thing I’ve ever done”.
Today, she uses her platforms and in-person appearances to speak about ulcerative colitis, ostomies, racial bias in healthcare, and the importance of early diagnosis in communities of color. She is driven by the messages she receives from young men and women who, like her, saw symptoms for years and did not know they were serious.
Using Social Media for Awareness, Connection, and Courage
When Victoria first began sharing her story online, she didn’t have a large audience and she did not consider herself an influencer.
What she did have was a clear intention: to be transparent about life with an autoimmune disease and an ostomy bag. She committed to showing her real life, including the parts many people hide: pain, fatigue, surgeries, and the day-to-day reality of living with a chronic condition.
Over time, her audience grew to more than half a million followers across platforms.
“I still don’t really see myself as an influencer,” she says. “I see myself as someone who shows up as herself and tells the truth.”
Her DMs tell the impact of that choice: People message her saying her videos gave them the courage to schedule a colonoscopy, to ask a new doctor for help, or to move forward with ostomy surgery. Others share that a loved one died after refusing to eat because of stigma around the bag. Still others admit they have seen blood in their stool for years and never knew it was a warning sign until they saw her content.
“It’s not easy to get online and say, ‘I poop in a bag,’” she says. “But if it helps someone live, it’s worth it”.
Naming Medical Gaslighting
Tiffany also asks Victoria to address medical gaslighting, a theme that runs throughout her story and across the NOWINCLUDED community. Victoria describes times when her pain was minimized or dismissed, including a visit where a physician suggested she was “bouncing around” emergency rooms to seek pain medication.
She challenged that assumption directly, explaining that if she wanted to misuse medications, she would not be in the ER. She was there because she was trying to trust the system and needed help.
She points to a larger pattern: when many people in the same community share nearly identical stories of being ignored or accused, “everyone is not telling the same lie.”
Her advice to listeners is practical and firm: The medical team works for you. You are allowed to ask questions, seek second opinions, and change providers. If your concerns are repeatedly dismissed, you can “fire” that team and find one that listens.
Representation, Fenty, and Redefining What Illness Looks Like
One of Victoria’s recent milestones highlights the power of visibility. She became the first woman with an ostomy bag to serve as a Fenty ambassador.
She received messages from ostomates, doctors, nurses, and community members who called the campaign “groundbreaking.” For many, seeing an ostomy bag in a mainstream beauty campaign helped challenge assumptions about beauty, disability, and chronic illness.
For Victoria, the partnership felt like validation that she could be both an ostomy patient and fully herself: stylish, confident, and seen.
“It felt like a stamp of approval,” she says. “Representation is important”.
The Thief Inside: Living With an Invisible Illness
When asked what she wishes people understood about inflammatory bowel disease, Victoria emphasizes that “invisible” does not mean minor.
She compares IBD to a thief. If someone robs you at gunpoint, you can identify them afterward. When the thief lives inside you, it is harder to name, but just as destructive.
Even when she looks well on the outside, she explains, the disease can be taking a toll physically, mentally, emotionally, and financially. Medication side effects, fatigue, and physical limitations can make it difficult to recognize yourself or live the way you did before.
Over time, she has moved from seeing herself only as a patient to identifying as a survivor and advocate. Her goal now is to ensure that no one else spends 20 years fighting for answers.
For listeners who have been told “you’re too young”, “you don’t look sick”, or “that disease doesn’t happen to people like you,” Victoria’s story offers both validation and a roadmap for self-advocacy.
Join the Conversation
Unfiltered is powered by Acclinate’s NOWINCLUDED community, a safe space where people can access trusted, medically reviewed information, hear real stories from people who look like them, and share their own health journeys in a supportive environment.
If you or someone you love has unexplained gastrointestinal symptoms, blood in the stool, or a long history of being dismissed by providers, this episode is an important listen.
Stream Episode 3 of Unfiltered and continue the conversation inside the NOWINCLUDED community.
