Professional Soccer Player Describes Life with Autoimmune Diseases

Shannon Boxx, a professional women’s soccer player, secretly battled two autoimmune diseases while winning medals across the globe

Playing Professionally with Invisible Illnesses

In 2012, Shannon Boxx, a professional soccer player on the US national women’s team, was at the top of her career. She had earned medals at three World Cup games and two Olympic gold medals. However, unbeknownst to her teammates and coaches, she had actually been diagnosed with a debilitating autoimmune disease a decade prior, and another autoimmune disease just four years ago.

Boxx, now 42, was first diagnosed with Sjogren’s Syndrome in 2002, which causes widespread dryness, joint pain and fatigue, among other symptoms. She was later diagnosed in 2008 with systemic lupus erythematosus (SLE), or simply, lupus, which also causes a myriad of symptoms, including joint pain, muscle pain, fatigue, skin rashes, brain fog and major organ involvement.

Treatment for Lupus and Sjogren’s Symptoms

When interviewed by the publication The Undefeated, Boxx said that she manages her lupus flares by wearing compression pants, which help with the joint pain that she experiences in her knees. She also takes hydroxychloroquine, also known as Plaquenil, an anti-malarial drug that helps her to manage the joint pain associated with both of her autoimmune conditions. Boxx describes her joint pain as severe; “There were times, even when I was playing on the national team, I was having teammates cut my steak for me because it hurt so much on my wrist to actually hold onto a fork or a knife.”

Fatigue and brain fog are other symptoms that Boxx battles daily. “I used to be able to run forever, and now I can barely walk sometimes for a mile or two. And that’s pretty heartbreaking,” she confessed. Boxx has children, and she wants to be able to run around with her kids for as long as possible. “To know that there’s days that I can’t do it, it puts you in a really bad place, mentally,” she said. When asked about how the fatigue feels, she commented, “It is this feeling of a weight just sitting on you and just even to lift your head off the pillow takes so much effort and your eyes don’t want to open. When I was playing it felt like my feet were in quicksand.”

Autoimmune Disease Triggers

Boxx explained that one of the main triggers for her autoimmune flares is stress. Now that the coronavirus is grappling the world, the global pandemic has added another layer of anxiety to the mix, especially given that she is immunocompromised. As a result, the professional athlete is following local shelter-in-place orders, wearing masks diligently and ensuring to frequently wash her hands and stay six feet apart from others.

Another source of anxiety is the fact that hydroxychloroquine, the medication that she takes, has become more scarce as a result of it being explored for its potential use in treating COVID-19. “It makes me sad that there are a lot of people that are suffering or even worse because they now can’t get the medication that they need,” she said.

Boxx believes another potential source of her flares is over-exposure to the sun, though thankfully, most days are overcast in her home of Portland, Oregon in the Pacific Northwest. She also frequently experiences the so-called ‘butterfly rash‘ that is a hallmark of lupus, and can arise following exposure to sunlight.

Two other factors that must be considered in the pathogenesis of autoimmune disease are sex and race. According to the Sjogren’s Foundation, nine out of 10 Sjogren’s patients are women; similarly, the US National Library of Medicine states that nine out of 10 lupus patients are women. Lupus is also three times more likely to occur in African American women than white women. Boxx, for her part, is a biracial woman, so her gender and ethnic background may have played a part in developing autoimmune diseases.

Moving Forward with Chronic Illness

Shannon Boxx plays in a friendly soccer match against Brazil’s women’s team.

Though living with two different autoimmune conditions is undeniably challenging, Shannon Boxx is determined to live her best life. She retired from playing professional soccer in 2015, and is focusing on taking care of her own health, and spending time with her husband and kids. Though she has retired from professional soccer, she enjoys playing non-competitive games with other international teams and coaching kids’ soccer teams.

Boxx is also an advocate for those living with chronic illnesses, and actively participates in awareness campaigns for the Lupus Foundation of America. Commenting on her conditions, she said, “I’ve been able to deal with it, and still do something that I love…[lupus] has shown me that I can’t take [soccer] for granted, because that’s something that I love to do. If anything it’s given me perspective.”

What is Medical Gaslighting?

“Maybe it’s just all in my head?”

That was the question Isabella Rosario asked herself after unsuccessfully trying to get a diagnosis for her numerous debilitating symptoms for over a year-long period. These concerning symptoms included migraines, joint dislocations, chest pain, lightheadedness, pneumonia and more. When she first saw a doctor at her university clinic, and later, her GP, she was told what she was experiencing was due to stress related to her studies, and completely psychological in nature. Eventually, after seeing numerous specialists, she was diagnosed with two chronic health conditions – hypermobility spectrum disorder (HPD) and postural orthostatic tachycardia syndrome (POTS). 

Isabella was fortunate to eventually get a diagnosis, but other chronic illness sufferers are not so lucky. Many medical professionals routinely dismiss their patients’ ailments and concerns – a phenomenon known as medical gaslighting. Eventually, patients who have been gaslit will begin to question their own sanity and wonder if their health problems are actually ‘real’ or just a figment of their own imagination.

According to the blog A Journey Through the Fog, medical gaslighting can take many forms, including:

  • Minimizing debilitating or dangerous symptoms. – “Your pain can’t be that bad
  • Blaming symptoms on mental illness. – “It’s all in your head” 
  • Assuming a diagnosis based on sex, race, identity, age, gender, ethnicity or weight. – “If you lost weight, your symptoms would disappear
  • Refusing to order important tests or imaging work. – “I know you don’t have [condition], I do not need an MRI to tell me this. I know how to do my job
  • Refusing to discuss the health issues with the patient. Berating patients for trying to self-diagnose. – “Who’s the doctor here, me or Google?” 

Throughout the course of my journey to being diagnosed with various autoimmune diseases and chronic illnesses, including Sjogren’s Syndrome, Hidradenitis Suppurativa and Benign Fasciculation Syndrome, my symptoms were either minimized or completely discounted by medical professionals. As I detail in the blog post, When Your Doctor Doesn’t Believe You, when I first brought up joint pain in my hands to my GP at age 19, he accused me of ‘texting too much’ when in reality, I had undiagnosed Sjogren’s Syndrome that was quickly developing into Rheumatoid Arthritis (RA).

In another instance, I needed a referral to see a Rheumatologist. When the nurse checked me in and asked about the reason for the visit, she said, ‘How does someone your age need to see a Rheumatologist? Did you wear high heels too much in high school?’ This kind of comment is not only rude and uncalled for, but patronizing and dismissive as well. People of all ages can experience a myriad of health issues, and should be taken seriously.

Last year, a video posted by a nurse on the popular social media platform TikTok drew outrage among the chronic illness community. The video featured a nurse imitating a patient struggling to breathe, while the nurse refused to help. She then captioned the video with the words: “We know when y’all are faking’. The video prompted many chronic illness patients to respond recounting their own stories of medical gaslighting, using the hashtag #PatientsAreNotFaking.

According to healthline.com, women are more likely to have their pain described as ’emotional’ or psychological in nature. Meanwhile, patients of color are less likely to be thoroughly examined as compared to their white counterparts. This systemic sexism and racism in the healthcare industry was also pointed out by many using the same hashtag:

In order for patients to get the healthcare they need (and deserve), medical professionals need to take their patients seriously; and that includes listening to their experiences, being compassionate, and issuing the necessary examinations and other tests needed to get an accurate diagnosis. My hope is that if you’ve ever experienced medical gaslighting, that you remain assertive and find a healthcare team that will take the necessary action to diagnose and treat your illness.

Have you experienced medical gaslighting before? If so, comment below to share your experience.

8-Year-Old Who Died from Autoimmune Diseases Leaves Legacy List of Rules

Ellie Pruitt was an 8-year-old girl who left a legacy of wisdom after passing from autoimmune diseases

Ellie Pruitt was an 8-year-old girl from Canton, Georgia, who passed away from various autoimmune diseases.

When Ellie was just three years old, she began to complain of pains in her legs and fatigue. Ellie’s parents took her to a Pediatric Rheumatologist who confirmed that she had juvenile rheumatoid arthritis, an autoimmune condition causing painful inflammation in the joints. She took steroids and received injections of methotrexate, a disease-modifying anti-rheumatic drug designed to reduce the inflammation.

During Ellie’s short lifetime, she participated in medical studies to determine what causes autoimmune disease. Both of her parents, Heather and Chuck Pruitt, have autoimmune conditions themselves; Heather was diagnosed with type 1 diabetes when she was a college senior, and Chuck was diagnosed with lupus at age 15.

In addition to the medical studies, Ellie and her family participated in the Walk to Cure Arthritis. They formed a team of families representing four children with the condition, called the Woodstock Warriors Against Juvenile Arthritis. Their team raised more than $5,000 for the cause.

Ellie participated in the Walk to Cure Arthritis with her family

After Ellie passed away on February 6th, her parents found a list of ‘rules to live by‘ that she had written. The rules were: 1) Have fun 2) No fighting 3) No pushing, shoving or hitting, and 4) Always love. After her parents found the list of rules, they decided to share it with her classmates to help comfort them after her passing.

Ellie Pruitt’s list of rules to live by

“It’s amazing that an 8-year-old little girl knew what we should focus on,” her mother Heather Pruitt said. “She started [rule] number 5, but erased it, because she knew that’s the greatest…If you can do all those things, you’re going to be in good shape.”

As a tribute to young Ellie’s wisdom, her hometown decided to display her list of rules in various places around their community. Local businesses like Bruster’s and Chick-fil-A displayed rules 1 and 4 on signage outside their stores.

Chick-fil-A displays a sign with two of Ellie’s rules on it

According to Ellie’s obituary, she was very artistic and loved to do crafts, draw, and paint. She was also a dancer and a musician (she played the piano). Her favorite places were school, church and the beach.

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