Back to Stories

Mindset, Community, and PSC: Ashley Henderson

Meet Ashley: Bringing Gratitude and Consistency into Every Day

Ashley Henderson has never let health conditions keep her from pursuing her passions, not even as a child.

“I grew up dancing competitively from age 7 to18, then helped run a dance studio and a competition team,” she said. “I started having health issues in high school. I would miss a lot of school, but I’d still go to dance because if I didn’t feel well, I could just leave and go to the bathroom. At school, because I didn’t ‘look sick,’ I would get in trouble when I needed to go to the restroom multiple times in one class.”  

After being diagnosed with Crohn’s disease at the age of 17, Ashley’s lifelong GI and belly issues made more sense. But, starting last year, new symptoms added yet another speed bump to Ashley’s health journey: primary sclerosing cholangitis (PSC).

“From September 2022 to April 2023, I had to have my gallbladder removed, received a PSC diagnosis, got my appendix out, too, and also found out about a cancerous tumor,” she said. “Now, I’ve spent so much time in doctors’ offices and in hospitals that I’ve really had to learn to speak up. There have been times where I’ve had to repeat, three or four times, something that I know is true for my body and my care. Trying to explain that to a physician – when I live with this everyday, while they know how it’s ‘supposed’ to look – is so frustrating.”

But Ashley inherited a resilient attitude from her dad which, coupled with her faith and mindfulness practices, has empowered her to tackle every health challenge that comes her way. This has been especially useful with her PSC diagnosis, as there’s not yet any treatment that works for her, nor is there a cure for PSC in any patients.

“I still struggle more often than I care to admit, falling into a mindset of ‘Gosh, it would be so nice to be normal,’ and ‘Why are all of these people healthy while I have five diagnoses, do everything right, but still have flare ups and feel bad,’” she said. “There are times whenI fall into that, but I’ve learned to switch that mindset: I have two legs, I can walk, I can speak and see, I don’t have to carry an oxygen tank around. I actually have a tattoo that says, ‘It could be worse’ which helps remind me.”

This tattoo was originally inspired by a friend, and shows just how important Ashley’s community is to her health and wellbeing. Today, her work friends continue to provide support through every hospital stay and bump in her mental wellbeing. Ashley firmly believes that she was lucky to have moved to St. Louis and started working for 1st Phorm, a health and fitness company, right before her 2022-2023 diagnoses started, because she met so many of her closest friends through this company.

“Being surrounded by their positivity everyday helps me maintain a positive mindset. If I come in one day, feeling down or feeling bad, I’m met with a supportive ‘How can I help you’ instead of commiseration,” she said. “The health and fitness world can be really awesome and really understanding, so if you find your way to that side of it, you’re in a great space.”

In her day-to-day life, Ashley remains focused on everything that she can control to influence her health for the better. So as much as she loves a good margarita, she steers clear of them for the sake of her long-term liver health. She also avoids so-called “diet” foods, opting instead for whole foods that are nutrient dense.

“I work really hard to feel good,” she said.“And I’ve seen how it changed how I felt in my body, so now I get to see how much it’s changed my mentality. I want to enjoy a long and healthy life, so ifI don’t prioritize my health – with all the things I have going on inside my body – I’m not going to get the life that I want.”

One pillar of her dream life is her own lifelong goal of becoming a mom.

“Some of my first questions with PSC were: Can I pass this down? How can it impact pregnancy?” she said. “I’m thinking a lot about what is at risk of passing down because it would be very difficult to raise a kid and watch them go through what I’m going through.”

Whether she’s dealing with a difficult divorce as a 30-year-old or traveling to yet another doctor’s appointment, Ashley continues to maintain an up-front and vulnerable approach to her public persona. She makes a point to cover the realities of her weight loss journey, the challenges linked to maintaining health due to invisible illnesses, and celebrations of new personal records in the gym.

Through everything, Ashley embraces each opportunity to support her community, and to build new, meaningful connections.

“I believe that we’re supposed to make peoples’ lives better and easier around us,” she said. “We’re supposed to make everyone feel included and seen, no matter what that looks like. So if I can share my struggles and my celebrations and my story in order to help others, then I’ll do it. I start every day with prayer and I use gratitude to help change my perspective on tough situations because I live a really blessed life. Truly, it could be worse.”

Here are some other stories.

Summary.
Patient Advocate, Journalist, and Parent: Gabrielle Davis

Patient Advocate, Journalist, and Parent: Gabrielle Davis

Meet Gabrielle: Turning To Hope Despite Lupus Nephritis
Read Story
Destigmatizing Epilepsy As A Children’s Book Author: Josie Martinez

Destigmatizing Epilepsy As A Children’s Book Author: Josie Martinez

Meet Josie: Emphasizing Representation for the Disability Community
Read Story