Sidelined by pain, she’s building a new life and discovering how to use her passion for good

LaSheila Yates has spent her whole life fighting for others. A Louisiana native who settled in Iowa, she previously served as the Executive Director of the Cedar Rapids Civil Rights Commission and Chief Diversity Officer for the City of Cedar Rapids. But in 2008, her life took a turn she had never expected.

LaSheila began experiencing issues with her gastrointestinal (GI) tract and embarked on what would turn out to be a long, convoluted journey searching for answers and help. She was quickly diagnosed with ulcerative colitis (UC), a disease that causes long-lasting inflammation and ulcers in the bowels and digestive tract. Doctors initially told her that it was a condition that wouldn’t get serious until she was a senior citizen… but she was in her 30s, and it just kept getting worse. LaSheila had been very ill as a teenager with a condition called Guillain-Barre syndrome, but doctors said the two problems were unrelated.

It was when LaSheila finally visited the Mayo Clinic that she learned what was happening within her body: due to the damage caused by her UC, her entire large intestine had to be immediately removed. More surgeries were to come. One created a J-pouch, which uses the body’s small intestines to make a pouch to collect waste, initially outside the body. But the J-pouch tore, and on New Year’s Eve of 2015, she was rushed to the ER and went into septic shock, nearly losing her life.

LaSheila had a total of seven surgeries between 2015 and 2016, which were necessary but also created almost as many problems as they cured. She suffered inflammatory conditions of first the J-pouch itself and then the portion of her rectum attached to it (“pouchitis” and “cuffitis”). Then came another type of pain, another diagnosis: pelvic floor dysfunction, a condition where patients lose the ability to control the muscles that support the organs in the pelvis. It causes muscles to contract uncontrollably, causing extreme pain.

Facing another obstacle

It was the pelvic floor dysfunction that led to the chronic low back pain, which has truly kept LaSheila, now 38, sidelined. Everything is connected inside the body, and the constant tension in her pelvic floor muscles pull on other muscles in her back, which tighten up in response. She has trouble walking any distance before the muscles in her low back seize up. Painful flares of her UC restrict her ability to complete the physical therapy exercises she’s told will help with her pelvic floor dysfunction. She uses a wheeled walker and a cane to get around, but it’s so difficult to even get to the corner of the street or up a flight of stairs that she usually stays home.

“This pelvic floor pain is just the icing on the cake—like, what the heck, another diagnosis?” she says. But about a month ago, when she was diagnosed with yet another unpleasant chronic condition—gastroesophageal reflux disease (GERD)—something changed. “I decided that I will no longer get sad, depressed, or angry when diagnosed with a new chronic illness. As long as it’s not terminal, I can live with it and make the necessary lifestyle changes to move forward.”

LaSheila has tried a number of treatments for her low back pain and pelvic floor dysfunction, including nerve blocks, trigger point injections, cortisone shots, PT, and many, many medications. Nothing much has helped, though she’s hopeful about upcoming physical therapy focused on her pelvic floor. Currently, she visits both a pain clinic and a pain psychiatrist. 

“Working with the pain psychiatrist has given me a way to grieve the life I had,” she says. “I’m getting to the point where I can start to say ‘I think the life I have now is OK.’”

A new direction

For a few years, LaSheila took opiate medications, which helped the pain but had other, unexpected costs. After her health forced her to resign her job and go on disability, she had a chance to sit and reflect. She realized that her memories of the past few years were patchy—flipping through photos, she could sometimes only barely remember when they were taken—and decided to transition off of opiates.

Her pharmacist warned it would be a hard process, and it was. But she is thrilled to say she’s gone from 18 medications to two. She fully recognizes that some people need those medications to function, and reiterates that each person has to choose for themselves:  “Whether you’re taking them or not, it’s about about your quality of life. Yes, I do live in a lot of pain. But for me, the memories are worth it.”

This decision tied into the new way LaSheila was trying to see her life. “I’m going to keep doing stuff that matters,” she says. “I don’t feel like what I’ve gone through was in vain: those were the cards I have been dealt. Maybe if I would have known ahead of time, I would have been discouraged. But I take things day by day now.” Her advice to others in the situation? “It’s the illness that’s problematic, not you. So be kind to yourself. If possible, focus on the small wins. Your lifestyle may change but try not to give up on life completely.”

Battling bias

In her decade of searching for an answer to her chronic pain, LaSheila learned early on that coping with people’s assumptions about race, gender, ability—and even her Southern accent—was going to be a part of her medical journey.

“The first thing that people see when they see me is that I’m black. And then they see that I’m a woman. And then they see I have a disability. I hate to say it but they do judge you—people can be really rude!” she says. “So I decided that I’m going to take this, learn from it, and do better. If people are that way to me, I hate to think that it’s the same for another individual with a fresh diagnosis who doesn’t know what to do. I don’t want them to feel that they have to take that type of treatment. They don’t. It’s about being respectful.”

When her health problems first forced her to quit working full-time, LaSheila founded a small business with her husband and some family members called Cultural Perspectives, LLC, which develops diversity education, training, and cultural competency training for private, government, and not-for-profit organizations. It allows her to work when she’s able, even if that’s when the pain keeps her up in the middle of the night.

“It helps me to help other people and that’s what I find rewarding,” she says. “If you were talking to one of my family members, they’d say, ‘Sheila can be socially awkward. But when it comes to getting stuff done, she’s right on.’ I really want to help be a support for people.” 

One facet of her company that she’s really passionate about is the Multicultural Small Business Institute, which promotes entrepreneurship and cross-cultural relationships by offering small business courses to traditionally underrepresented populations. This year she’s become involved as a producer and moderator of a long-running TV show on her local station (KCRG) called “Ethical Perspectives on the News.”

“These programs let me humanize people,” LaSheila says. “I want to make sure that everyone knows that there’s another human right here. Not to look at them as a disabled person, or a black person, and to understand that we are someone’s mother, daughter, neighbor. How would you feel if your loved ones were treated the way that you’re treating me?”

Of course she wants to feel better for herself. But she also yearns to be able to contribute more. In so many ways, this experience has shown her just how many people are struggling and how much change is needed. She wants to feel well enough to truly help others going through the same kind of hard times she, herself, knows too well.

“It’s about navigating through the world, and figuring out how do you do it in a way that affirms who people are,” she says. “Even if I’m never going to have the life that I had before I had this illness, that doesn’t mean I can’t have a great life where I’m pacing myself and am more intentional about what I want to do.”

RESOURCES

Crohn’s and Colitis Foundation: crohnscolitisfoundation.org