More

This mom's empowering selfies show off life with an invisible illness.

She has Crohn's disease, but Crohn's doesn't have her.

This mom's empowering selfies show off life with an invisible illness.

There are a lot of hard things about living with Crohn's disease. Not being able to talk about it might be the worst one.

Imagine being constantly tired, but in a way that even 15 hours of sleep a day can't cure. Imagine going to dinner, but every time you eat something as simple as a roll of warm bread, it feels like it might've had broken glass inside of it.

Then, it's time to go to the bathroom. Again. Is that the fifth time this hour or the sixth? You've lost track. It's a running joke now — your friends think it's funny, but nobody really talks about what happens when you step away. Because, really, you look fine. Just tired.


Crohn's, as defined by the Centers for Disease Control and Prevention, is "a condition of chronic inflammation potentially involving any location of the gastrointestinal tract." But as defined by myself, someone with Crohn's, it's like having food poisoning all the time. The symptoms and presentation are different for every patient, but one thing is the same for all: It's an invisible illness, and it sucks.

And let's face it. Talkin' about your poop is taboo. Especially if you're a woman.

A little privacy, please?

Well, unless you're Krystal Miller.

Stumble over to her Facebook page, Bag Lady Mama, and nearly every post has a reference to doing the doo.

Krystal, who lives in Perth, Australia, has Crohn's. She was first diagnosed at 15 years old, and by 22, most of her intestinal tract had been badly damaged by the disease. At that point, doctors decided to remove large portions of her large and small intestines.

Krystal Miller and her husband, Shannon, son, Lukas, and daughter, Arabella. All photos by Krystal Miller, used with permission.

For the last decade, she's been living with a permanent ileostomy, a surgically made opening in the abdominal wall that connects the lower intestine to an ostomy bag.

Now, at 32, she's sharing her daily experiences through Facebook.

Her posts show raw insight into her world. They're unapologetically blunt, they're full of curse words, and they're gaining traction — quickly.

In an interview with Upworthy, Krystal said she expected to have a few hundred Likes on her page within a month or two of launching it, mostly from close friends who knew about her life with Crohn's. But since it launched Jan. 25, it's reached more than 13,000 Likes.

Check out her posts and you'll see some serious granny-panty love.

"I did expect it to reach Europe and America because I have international friends," she said. "But I never expected for it to be as expansive as it has been. It's crazy — I actually got recognized at my local shops the other day!"

Her photos show off her day-to-day life with her two children, Lukas, 4, and Arabella, five months, and her husband, Shannon. Each is filled with her unabashed love for her body.

Krystal, 32 weeks pregnant and wearing her bag, and her husband, Shannon, during their son's fourth birthday party.

Scars, bag, and the ostomy itself are all on display in the hopes that she can help remove some of the stigma around Crohn's and what life with the disease is like.

It's not a comfortable thing to live with physically or socially. It took years before Krystal was willing to open up about it.

"When I was first diagnosed, I was very uncomfortable. I would be in-tears uncomfortable if someone had to go to the toilet after me. ... And when you're young, it's embarrassing and it's pretty f*cking horrific. It's been slow progress , but I just kind of got sick of caring. Like, who gives a f*ck, it is what it is, I can't do anything about it."

She would go to extreme lengths to cover up the symptoms of the disease, especially when using public restrooms. But she credits the surgery that removed her rectum with alleviating a lot of that embarrassment as well. Once her permanent ostomy was in place, many of her symptoms were alleviated, and her experiences with "number 2" became more matter-of-fact than anything else.

"It's been slow progress , but I just kind of got sick of caring. Like, who gives a f*ck, it is what it is, I can't do anything about it."

From there, it became about reclaiming her sexiness and self-confidence, which started with revisiting how she looked at herself.

"When we look at other women, we don’t see the same flaws that we see in ourself. And I’ve had to retrain myself to see myself the way others might see me, to not notice the finer intricacies that I see on myself. Other people don’t see the sh*t that we see."

Krystal, Arabella, and Lukas.

But she hasn't stopped there. She also posts fashion tips for other women with Crohn's and shares advice on how to dress the way you want while still being comfortable with a bag.

Krystal speaking at Fremantle Hospital. She's studying to become a stomal therapist.

Krystal does have one thing she wants to say to other people who have Crohn's and other IBDs: It's not always going to be easy, and that's OK.

"We have earned that right to f*cking hate the world," she said. "We are entitled to f*cking be angry and to be sad and to have bad days. If you need to feel sorry for yourself, then feel sorry for yourself. But then pick yourself up and keep going."

Oh, and one more thing — she's got a hashtag for the world: #bagbitchesrock.

True

Judy Vaughan has spent most of her life helping other women, first as the director of House of Ruth, a safe haven for homeless families in East Los Angeles, and later as the Project Coordinator for Women for Guatemala, a solidarity organization committed to raising awareness about human rights abuses.

But in 1996, she decided to take things a step further. A house became available in the mid-Wilshire area of Los Angeles and she was offered the opportunity to use it to help other women and children. So, in partnership with a group of 13 people who she knew from her years of activism, she decided to make it a transitional residence program for homeless women and their children. They called the program Alexandria House.

"I had learned from House of Ruth that families who are homeless are often isolated from the surrounding community," Judy says. "So we decided that as part of our mission, we would also be a neighborhood center and offer a number of resources and programs, including an after-school program and ESL classes."

She also decided that, unlike many other shelters in Los Angeles, she would accept mothers with their teenage boys.

"There are very few in Los Angeles [that do] due to what are considered liability issues," Judy explains. "Given the fact that there are (conservatively) 56,000 homeless people and only about 11,000 shelter beds on any one night, agencies can be selective on who they take."

Their Board of Directors had already determined that they should take families that would have difficulties finding a place. Some of these challenges include families with more than two children, immigrant families without legal documents, moms who are pregnant with other small children, families with a member who has a disability [and] families with service dogs.

"Being separated from your son or sons, especially in the early teen years, just adds to the stress that moms who are unhoused are already experiencing," Judy says.

"We were determined to offer women with teenage boys another choice."

Courtesy of Judy Vaughan

Alexandria House also doesn't kick boys out when they turn 18. For example, Judy says they currently have a mom with two daughters (21 and 2) and a son who just turned 18. The family had struggled to find a shelter that would take them all together, and once they found Alexandria House, they worried the boy would be kicked out on his 18th birthday. But, says Judy, "we were not going to ask him to leave because of his age."

Homelessness is a big issue in Los Angeles. "[It] is considered the homeless capital of the United States," Judy says. "The numbers have not changed significantly since 1984 when I was working at the House of Ruth." The COVID-19 pandemic has only compounded the problem. According to Los Angeles Homeless Services Authority (LAHSA), over 66,000 people in the greater Los Angeles area were experiencing homelessness in 2020, representing a rise of 12.7% compared with the year before.

Each woman who comes to Alexandria House has her own unique story, but some common reasons for ending up homeless include fleeing from a domestic violence or human trafficking situation, aging out of foster care and having no place to go, being priced out of an apartment, losing a job, or experiencing a family emergency with no 'cushion' to pay the rent.

"Homelessness is not a definition; it is a situation that a person finds themselves in, and in fact, it can happen to almost anyone. There are many practices and policies that make it almost impossible to break out of poverty and move out of homelessness."

And that's why Alexandria House exists: to help them move out of it. How long that takes depends on the woman, but according to Judy, families stay an average of 10 months. During that time, the women meet with support staff to identify needs and goals and put a plan of action in place.

A number of services are provided, including free childcare, programs and mentoring for school-age children, free mental health counseling, financial literacy classes and a savings program. They have also started Step Up Sisterhood LA, an entrepreneurial program to support women's dreams of starting their own businesses. "We serve as a support system for as long as a family would like," Judy says, even after they have moved on.

And so far, the program is a resounding success.

92 percent of the 200 families who stayed at Alexandria House have found financial stability and permanent housing — not becoming homeless again.

Since founding Alexandria House 25 years ago, Judy has never lost sight of her mission to join with others and create a vision of a more just society and community. That is why she is one of Tory Burch's Empowered Women this year — and the donation she receives as a nominee will go to Alexandria House and will help grow the new Start-up Sisterhood LA program.

"Alexandria House is such an important part of my life," says Judy. "It has been amazing to watch the children grow up and the moms recreate their lives for themselves and for their families. I have witnessed resiliency, courage, and heroic acts of generosity."

Simon & Garfunkel's song "Bridge Over Troubled Water" has been covered by more than 50 different musical artists, from Aretha Franklin to Elvis Presley to Willie Nelson. It's a timeless classic that taps into the universal struggle of feeling down and the comfort of having someone to lift us up. It's beloved for its soothing melody and cathartic lyrics, and after a year of pandemic challenges, it's perhaps more poignant now than ever.

A few years a go, American singer-songwriter Yebba Smith shared a solo a capella version of a part of "Bridge Over Troubled Water," in which she just casually sits and sings it on a bed. It's an impressive rendition on its own, highlighting Yebba's soulful, effortless voice.

But British singer Jacob Collier recently added his own layered harmony tracks to it, taking the performance to a whole other level.

Keep Reading Show less
Images courtesy of John Scully, Walden University, Ingrid Scully
True

Since March of 2020, over 29 million Americans have been diagnosed with COVID-19, according to the CDC. Over 540,000 have died in the United States as this unprecedented pandemic has swept the globe. And yet, by the end of 2020, it looked like science was winning: vaccines had been developed.

In celebration of the power of science we spoke to three people: an individual, a medical provider, and a vaccine scientist about how vaccines have impacted them throughout their lives. Here are their answers:

John Scully, 79, resident of Florida

Photo courtesy of John Scully

When John Scully was born, America was in the midst of an epidemic: tens of thousands of children in the United States were falling ill with paralytic poliomyelitis — otherwise known as polio, a disease that attacks the central nervous system and often leaves its victims partially or fully paralyzed.

"As kids, we were all afraid of getting polio," he says, "because if you got polio, you could end up in the dreaded iron lung and we were all terrified of those." Iron lungs were respirators that enclosed most of a person's body; people with severe cases often would end up in these respirators as they fought for their lives.

John remembers going to see matinee showings of cowboy movies on Saturdays and, before the movie, shorts would run. "Usually they showed the news," he says, "but I just remember seeing this one clip warning us about polio and it just showed all these kids in iron lungs." If kids survived the iron lung, they'd often come back to school on crutches, in leg braces, or in wheelchairs.

"We all tried to be really careful in the summer — or, as we called it back then, 'polio season,''" John says. This was because every year around Memorial Day, major outbreaks would begin to emerge and they'd spike sometime around August. People weren't really sure how the disease spread at the time, but many believed it traveled through the water. There was no cure — and every child was susceptible to getting sick with it.

"We couldn't swim in hot weather," he remembers, "and the municipal outdoor pool would close down in August."

Then, in 1954 clinical trials began for Dr. Jonas Salk's vaccine against polio and within a year, his vaccine was announced safe. "I got that vaccine at school," John says. Within two years, U.S. polio cases had dropped 85-95 percent — even before a second vaccine was developed by Dr. Albert Sabin in the 1960s. "I remember how much better things got after the vaccines came out. They changed everything," John says.

Keep Reading Show less