"How AS Taught Me to Stand Up for Myself"

IT HAD BEEN?over a decade since Alexis Hudgins, now 34, had seen a doctor. The Texan from El Paso had her reasons for avoiding the doctor’s office, but the pain in her lower back and sacroiliac joints had become so excruciating she couldn’t even get out of bed without assistance. It was June of 2020—the early days of the coronavirus pandemic—which meant that businesses were operating at limited capacity, and Hudgins had to enter the primary care facility alone while her wife waited in the car. Equipped with a face mask and a hopeful mindset, Hudgins headed inside. But her fears came alive during that doctor’s visit. She left shaken, tears streaming down her face. “Let’s get the heck out of here,” she exclaimed to her partner as she got in the car and slammed the door.

The doctor, Hudgins said, had berated and mocked her symptoms. When she explained to him that her wife had lupus and that based on her own symptoms—fatigue, joint pain, and skin issues—she thought she might have an autoimmune condition as well, the doctor scoffed and dismissed her. Seeing Hudgins was visibly upset by his response, the doctor offered her antidepressants. Hudgins was insulted: She wasn’t depressed. She only wanted help in figuring out the source of her pain.

Toughing It Out

The last time Hudgins had stepped foot into a primary care office she was 18 years old, and it was for a mandatory physical for school sports. Other than that, she had only been to a medical facility a handful of times throughout the years. As a Latina, Hudgins had her reservations when it came to healthcare. Not only because of gender and racial disparities within the healthcare system itself, but because coming from a hardworking Latinx family, the idea of “complaining” about health issues was frowned upon. She feared voicing her pain would come across as a sign of weakness that would hinder her professional growth. What if an employer found out she was sick? What if she needed to take time off for treatment?

After a lot of back-and-forth with the doctor that she stormed out on, Hudgins was able to convince him to give her a referral to a rheumatologist. “This is why I’ve put off doctors for so long,” she told to her partner on the ride home, recounting how the doctor had become agitated when she challenged him about her test results and symptoms. His assumption, says Hudgins, was that she was only complaining about severe pain to get a prescription for painkillers. But that could not have been farther from the truth. Unbeknownst to the doctor, Hudgins didn’t even believe in taking aspirin for a headache, shaped by her upbringing that she should just "tough it out."

Ironically, that upsetting doctor's visit proved to be worth it. Weeks later, the rheumatologist Hudgins was referred to told her she was in the early stages of ankylosing spondylitis (AS), an autoimmune type of arthritis that affects joints along the spine. The moment was bittersweet because while Hudgins was relieved that she had advocated for herself, she was also nervous: What was this disease she'd never heard of?

It's not just patients who are unfamiliar with AS. “The teaching has always been that AS affects males,” says Walter P. Maksymowych M.D., co-founder and principal investigator of the Spondyloarthritis Research Consortium of Canada (SPARCC). He adds that the typical delay to diagnosis is seven to eight years for men and nine to 10 years for women. “Unless a primary care doctor specializes in AS, they don’t think of this condition in women, but they should.” Newer studies support the fact that woman are just as vulnerable to the condition as men.

Armed with a diagnosis, Hudgins was still skeptical. She didn’t want to be labeled as less than or further marginalized by seeking treatment. “As a Hispanic or Latino, you don’t want to be considered lazy,” says Hudgins, who was a hairstylist at the time of her diagnosis. “We are already fighting for these job placements. The last thing you want to say is ‘I need this day off for treatment.’”

According to the United States Census Newsroom Archive, Latinos are already less likely than other marginalized groups to visit the doctor. Hudgins’ grandmother, who beat Hodgkin's lymphoma while working as a medical transcriber for 36 years in a military hospital, witnessed the disparaging things some doctors would write about patients. That experience convinced her grandmother to discourage her family from seeking unnecessary medical help and allowing a doctor to document information, because she believed it could be used against them. “If I seek help, will I be listed as a disabled liability?” worried Hudgins. “Will this hinder my chances at a normal livelihood and haunt me for the rest of my life?”

Courtesy of the subject

Asking Questions, Seeking Answers

For Hudgins, who had experienced?shingles—another autoimmune-related condition—in her 20s, the pain she experienced pre-AS diagnosis wasn’t anything new; she simply wrote it off to herself as wear and tear. When the pain became severe enough to send her to the emergency room a handful of times throughout the years, she would be given medication for relief and sent home. “You are so lively in your 20s that you don’t home in on your pain,” she says. “It’s like a car that makes the noises you don’t notice until one day you say, ‘oh shoot,’ this is getting pretty loud.”

When Hudgins turned 30, she noticed that her body was moving slower, and she got easily fatigued. While laying down she says she felt like the Tin Man from?The Wonderful Wizard of Oz, the mechanical fictional character who used oil to release his rusty joints to gain mobility.

“That’s a superb description (of AS),” says Dr. Maksymowych. “Patients describe the Tin Man because they feel as stiff as a board.” Dr. Maksymowych adds that feeling stuck after sitting for a long period can be an AS red flag. “You see these memes that are like ‘welcome to 30’ and I’m thinking to myself ‘shoot they aren’t lying,’” says Hudgins. “Thirty is rough when you can’t get out of bed!’”

The last straw came in April of 2020, a couple of months before that horrific primary care visit, when Hudgins began experiencing vertigo, a sensation that leaves you feeling as if the room is spinning. Studies support that balance disorders can occur in AS patients as a result of postural changes, muscle shortness, and movement limitations due to pain. “When I was walking, it was as if the wall was walking toward me,” says Hudgins. “It was such a trippy feeling that I couldn’t put off; how can I go through my day when the walls are chasing me?” She took herself to the emergency room, where they ran blood work and sent her home with pills for dizziness.

After no one reached out to explain Hudgins’ blood work results, her wife (who is a nurse) stepped in. She read the labs and realized her wife had a positive antinuclear antibody (ANA) test. This is when your immune system initiates an attack on your tissue, causing an autoimmune reaction. She urged Hudgins to see a doctor.

Courtesy of the subject

Breaking Down Barriers

Upon diagnosis, Hudgins was still uneasy. “Because the doctor worded it as ‘I think you are in the beginning stages,’ my mind took a trip like ‘maybe she isn’t sure,’” she says. Autoimmune conditions are hard for doctors to diagnose because symptoms can also mirror other conditions.

Dr. Maksymowych says patients should advocate for themselves and push for a referral to a specialist if they are not getting answers. If your symptoms involve pain at night and stiffness in the morning, it’s time to see that specialist. “Particularly in young people if you have back pain you shouldn’t dismiss it as being a problem with a disk.” He recommends requesting a magnetic resonance imaging test (MRI) which will provide early detection.

Today Hudgins stands strong. She recently turned her love for plants and ceramics into a small business called The Jungle Nook LLC, a pop-up/online boutique for plants and pots. She sees her new primary care doctor regularly and self-injects a weekly?biologic. The shot is designed to slow down the condition, as there is no cure for AS. “I feel like my AS is under control because I’m not in excruciating pain, but I don’t know if the progress is slowing down,” she says. “Or maybe this is as good as it gets, and I should be appreciative of it.” Either way, she vows, she’s going to keep on fighting.

To ensure that a doctor never overlooks or undermines Hudgins’ knowledge of her changing body, she has a few new tricks up her sleeve and suggests others take heed to them. “Stand naked in front of a full-length mirror and scan down from your hands to your feet,” she says. There are changes that are normal and there are changes that are not normal, but we won’t notice them if we don’t look at ourselves.” She says women can get so caught up in looking at their breasts and butts they forget to examine other parts of the body. “How can I show the doctor how swollen my hand is if I don’t have any reference?” says Hudgins. “So, take pictures and love on your body parts because that's when you will notice when something is wrong.”