For Female Veterans, Mental Health Challenges Are the Hidden Toll of Lupus

Living with lupus can be physically — and emotionally — painful

By Hope Hodge Seck
I October 1, 2024

Alice Sala was at the top of her military career when lupus took her down. An enlisted Army combat engineer, she was the first female first sergeant to ever serve in her combat bridging job specialty, and she’d just learned she was on track for promotion to sergeant major – the Army’s highest enlisted rank.

She loved what she did and she felt like a trailblazer. But she couldn’t ignore the sudden onslaught of symptoms — a new limp, debilitating pain, a distinctive butterfly-shaped rash — that all added up to a lupus diagnosis.

After 18 months of working to manage her symptoms and stay in uniform, Sala met with an Army doctor who gave her an ultimatum: She had to stop taking a drug infusion that helped with the disease but made her unable to deploy, or she had to accept a military retirement and leave the service.

Sala accepted a military retirement in 2020, having served in the Army for 21 years. Even though she’d been in uniform for longer than the standard 20-year military career, leaving before she was ready was devastating.

There was, she says, “a darkness that hovered over me because this is all I knew. I joined at 17, and I grew to love it. I love the soldiers, and I love taking care of them, and it’s like everything stopped in an instant.”

Sala is not alone in experiencing disorientation and sadness alongside the pain of lupus.

Difficult symptoms and difficulty getting diagnosed can harm mental health

In fact, says Tiffany Lange, Psy.D., a clinical psychologist and a member of HealthyWomen’s consortium of military experts, the unique characteristics of systemic lupus erythematosus (SLE) — a disease in which the body’s immune system targets healthy tissue — and the long time it often takes for patients to get a diagnosis can make it more taxing on mental health than other chronic diseases.

While Sala got her diagnosis relatively quickly, the average lupus patient waits six years for the disease to be identified because of the wide range of symptoms that often mimic other illnesses. In the early stages of experiencing lupus symptoms and trying to identify their cause, uncertainty and lack of validation from doctors can cause confidence to spiral.

“There can be some self-doubt, some questioning, a sense of feeling invalidated about reporting symptoms to medical providers, and that can just kind of exacerbate with stress over time,” Lange said. “It could lead to other mental health diagnoses, whether that’s depression, anxiety … impact on body image and self-esteem.”

In the active-duty military community, where nearly 7 out of 10 lupus patients are female, the mental health effects of this disease can be even more profound. Because lupus symptoms can be severe and debilitating, and treatments can sideline troops from aspects of military service, it’s not uncommon for military lupus patients to face discharge or retirement, bringing their careers to an unplanned end. That process and the aftermath, Lange said, can take its own toll.

“One of the great things about the military that we don’t often see in the civilian sector is this sense of camaraderie or connection to others, a sense of connecting to a greater purpose,” Lange said. “And for a chronic condition and a medical diagnosis to lead to a conclusion of that career, that service, it understandably would bring up a lot of questions about, what does this mean for me?”

Feelings of isolation and loneliness, she said, are common with an unplanned military discharge, and they only get worse when you’re working to manage a chronic and physically draining disease.

Added complications can come with being a woman in the military

For women in the military disproportionately affected by lupus, their own prior military experiences may make them more vulnerable to mental health struggles. Recent studies show a close link between lupus and post-traumatic stress disorder (PTSD), a mental health condition triggered by exposure to traumatic events and characterized by anxiety, hypervigilance (a constant state of alertness and awareness of your surroundings) and flashbacks. Not only does the presence of lupus make patients more likely to be diagnosed with PTSD; the opposite is also true. In fact, research shows that those who already have PTSD are twice as likely to be diagnosed with lupus. And women veterans are at high risk for developing PTSD.

While the reasons for the link between the diseases is not fully known, Lange said, a common factor is stress.

“When you’re physically not feeling well or fatigued, and you have more stress on the body, it can increase the amount of stress on the mind,” she said. “And the amount of stress on the mind can also increase the stress on the body.”

Lange advises military women, whether they’re beginning their journey with lupus or dealing with the aftermath of a lupus-related military discharge, to seek out support and community and look for understanding healthcare providers, rather than accepting a feeling that they have to go it alone. She also encourages them to explore their eligibility for care through the Department of Veterans Affairs — their disease may be considered service-connected if symptoms emerge while in uniform or within one year of leaving military service.

For Sala, now 43, the difficult journey with lupus continues. She’s still mourning the end of her time in the Army. Recently, she re-started therapy, which is helping her process her feelings of loss. Sala said she would advise other female troops and veterans newly battling lupus to find support groups and networks near them right away.

“I would definitely have them talk to somebody as soon as possible,” she said. “Because it doesn’t go away unless you talk to somebody.”