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.”

10 Facts about Crohn’s Disease

According to the Crohn’s & Colitis Foundation, Crohn’s is a chronic inflammatory condition of the gastrointestinal tract. Read on to learn 10 interesting facts about this autoimmune condition.

1. It’s more common than you think

An estimated 3 million Americans suffer from autoimmune diseases of the digestive tract, referred to as Inflammatory Bowel Disease (IBD). These conditions include Crohn’s disease, Celiac disease and Ulcerative Colitis. Women and men are equally likely to be affected by Crohn’s disease, unlike many other autoimmune conditions which are more prevalent among females.

2. Crohn’s affects patients early in life

Unlike some autoimmune diseases, such as Sjogren’s Syndrome, which are more likely to develop during middle-age, Crohn’s tends to develop early in a patient’s life. Most commonly, the disease will occur in one’s teens or twenties, though some patients can experience symptoms even earlier. According to WebMD, while most people are diagnosed before age 30, the disease can still occur in people in their 60s and beyond.

3. The gastrointestinal symptoms can be debilitating

The most common symptoms of Crohn’s are gastrointestinal in nature. These symptoms include abdominal cramps, diarrhea, weight loss, anemia and delayed growth (especially in younger children). There are actually different types of Crohn’s disease depending on which part of the gastrointestinal tract is affected, and each subtype has its own specific symptoms.

4. Non-Gastrointestinal symptoms are also problematic

Crohn’s patients sometimes experience symptoms that aren’t gastrointestinal in nature, and which are often more problematic than their bowel issues. These symptoms include: fever, colitic arthritis (which migrates along the body and affects one’s knees, ankles, hips, wrists and elbows), pericholangitis (an inflammation of the tissues around the bile ducts), kidney stones, urinary tract complications, and fistulas (abnormal connections between body parts, such as organs and blood vessels).

5. It can greatly impact one’s quality of life

According to the Crohn’s & Colitis Foundation, autoimmune conditions of the digestive tract can highly impact one’s quality of life. For example, the Foundation shared the story of Paige, who was diagnosed with Crohn’s at age 20. Paige had lost 40 lbs on her already petite frame as a result of the disease, and she even had difficulty standing up, since her muscles had become accustomed to her being doubled over in pain. Thankfully, by participating in clinical trials, Paige’s condition is now improving, and she’s regaining her quality of life.

6. The condition can impact one’s mental health too

The Crohn’s & Colitis Foundation states that rates of depression are higher among patients with Crohn’s disease and ulcerative colitis as compared to other diseases and the general population. Furthermore, anxiety is also common among patients who have IBD. Dr. Megan Riehl, a clinical psychologist with the University of Michigan’s Department of Gastroenterology, explains that stress and anxiety can contribute to ‘flares’ of the disease. She also says it’s imperative for patients to find ways to cope with living with a chronic illness, such as cognitive behavioral therapy.

7. A comprehensive physical exam is necessary for a Crohn’s diagnosis

A number of advanced diagnostic tools are used to determine if a patient has Crohn’s disease. These diagnostic procedures include: imaging scans and endoscopic procedures. Imaging scans involve CT scans or specialized X-rays to view your colon and ileum (a portion of the small intestine). Endoscopic procedures, such as a flexible sigmoidoscopy or a colonoscopy, involve the insertion of a tube into one’s rectum, lower colon or entire colon to examine the area in detail.

8. Crohn’s may be genetic in nature

According to John Hopkins Medicine, Crohn’s may be genetic, especially considering it’s more prevalent among people of certain ethnic groups. For example, people of Ashkenazi Jewish descent are at a greater risk of having the disease compared to the general population. In addition, a genetic cause is suspected, since studies have shown that between 1.5% and 28% of people with IBD have a first-degree relative, such as a parent, child or sibling who also has the disease.

9. Environmental triggers for Crohn’s may also be responsible

According to the Crohn’s & Colitis Foundation, the lack of complete gene penetrance and the rapid rise of IBD incidence in certain geographic regions suggests that both genetic and environmental factors contribute to this condition. Several environmental triggers currently being studied include: diet, smoking, viruses and psychological stress.

10. There is hope

If you or someone you know has Crohn’s disease, it is important to get support for your condition. In addition to working closely alongside a team of medical professionals to get the right treatment, patients are encouraged to find a local support group where they can connect with others who are living with the condition. Moreover, patients should consider taking advantage of the many patient resources out there, such as the Crohn’s and Colitis online community, the IBDVisible blog and the patient stories center. Remember, you’re not alone in the fight against Crohn’s!

Thank you for stopping by Autoimmune Warrior. If you found this article to be informative, please like, share, and comment below!

Could the secret to chronic pain relief lie in the memories stored in your body and mind?

A woman undergoes EMDR therapy by a licensed practitioner.

It is clear that stress can have a direct impact on autoimmune, chronic pain and other health conditions. Autoimmune Warrior shares research on the role of chronic stress in autoimmune disorders in this blog post. However, the nuances regarding the types of stress and how to deal with them are not often something we talk about with a medical physician, or to anyone in general.

The body and mind are inherently connected and emotional stressors can and do impact our physical functioning. Beyond everyday stressors, traumatic events, whether they occurred long, long ago in your early childhood, or something you experienced this year can get stored in your body and can manifest in the form of stomachaches, back and joint pain, or chronic migraines, to name a few. Everyday stressors may refer to issues with setting boundaries with a family member, difficulty speaking up for your needs, or putting your needs last ahead of everyone else.

The effects of emotional stress and trauma on the body’s hormonal functioning and immune system are well researched. Dr. Gabor Mate, a Hungarian physician who has investigated for many years the potential psychological attributes to his patients’ physical illnesses, including breast cancer, ALS and intestinal issues, has found commonalities in his patients dealing with similar health issues. He found links between those who experienced childhood abuse, neglect and/or maintaining unhelpful relational roles and those who had chronic health issues. These connections are described in his book, When the Body Says No.

Stress and trauma impact hormone functioning. Specifically, research has found that cortisol, a critical hormone implicated in managing stress responses, is impacted by traumatic experiences. For example, decreased cortisol levels have been found in women who have a history of childhood sexual abuse and Post Traumatic Stress Disorder (PTSD). This change in cortisol level functioning can impact the immune system (Kloet et al., 2006), as healthy levels of cortisol help to regulate inflammatory response and glucose levels. When too much cortisol is released from the body, it constantly feels as if it is in fight or flight mode (whether it’s a real or perceived threat), which can inhibit the regulation of glucose levels and responses to attacks on the immune system. Click here for more information.

Furthermore, the ACEs (Adverse Childhood Experiences) study conducted by Kaiser, found that the more adverse childhood events you have had, the higher at risk you may be for certain health conditions such as heart disease, breast cancer and diabetes. For more information on ACEs, read Autoimmune Warrior’s blog post. Additionally, click here to find out what your ACE score is.

So what does this all mean? It means that help in the form of psychological healing may positively impact your physical health and decrease the chronic pain. Addressing long-avoided emotional pain from past trauma can (and does!) help. If you are thinking to yourself “I didn’t experience trauma!” but you wonder why those boundaries are so hard to set, you feel guilty if you don’t take care of your parents’ emotional or physical needs, or you’re avoiding social situations (just a few examples), chances are there’s something from your past that may be keeping you from living an emotionally and physically healthier life today. There are many options for helping you in this area, particularly forms of body-based psychotherapy models that can be effective with chronic pain, including EMDR therapy.

EMDR (Eye Movement Desensitization Reprocessing) therapy uses bilateral stimulation in the form of eye movements or alternative tapping to activate memory networks which are linked to maladaptive functioning; in other words, it activates the traumatic memories that are linked to negative feelings and beliefs that we have about ourselves now (for example, having low self-esteem, triggers to not feeling safe when you know logically that you are). During a REM sleep cycle your eyes move back and forth as you process the day’s events. In the same way, bringing up those past memories with eye movements in a safe, controlled environment with a skilled EMDR therapist helps the brain process through the memory and come to a more adaptive resolution. It allows the brain the space and time to do what it couldn’t do at the time that event occurred—process. And that can help remove self-blame or other negative beliefs, and in turn, relieves symptoms of anxiety, depression and PTSD, to name a few. With the relief of mental health symptoms, there is less stress on your immune system and this can improve overall pain symptoms and your energy level. To learn more about EMDR therapy, visit www.EMDRIA.org.

As Bessel van der Kolk suggests, The Body Keeps the Score, so let’s not forget to consider what has happened (or is happening!) in your life which may be contributing to your autoimmune symptoms.

Brooke Bender is a licensed Marriage and Family Therapist and Board Certified Art Therapist, as well as an EMDR certified therapist practicing near Los Angeles, California. For more about Brooke, please visit: www.brookebender.com