Making Sense of an Unexplainable Circumstance

Jasmine Thomas says she can’t remember what life was like before her lupus diagnosis. She was a teenager when early symptoms of the autoimmune disease began plaguing her. She originally ignored them, but the constant swelling in her joints, hair loss, extreme fatigue, and chest pains became too unbearable to overlook.

Jasmine began having trigger symptoms around the age of 15. Those included long-lasting hives, heavy fatigue and constant migraine headaches, in addition to a recurring low-grade fever. She did not receive any medical care until she turned 18, however. From 18 to 23—the age she was officially diagnosed with lupus—she began receiving mostly emergency therapy. Physical symptoms of joint pain, swelling, chills, and shortness of breath began shortly after the birth of her son at 24.

Jasmine’s symptoms have affected her life in a number of ways, especially when it comes to her parental duties. Her energy fluctuates throughout the day, making it difficult to be fully present for her now four children. Any time she experiences inflammation or swelling, Jasmine’s levels of fatigue increases. No amount of sleep can remedy said exhaustion.

Though many of her symptoms are common for the close to 1.5 million individuals who live with lupus, each person is unique and symptoms can vary widely.

Struggling to find a doctor who would take her diagnosis seriously

Now 30 years old, as a Black woman, Jasmine understands all too well the struggles of overcoming social prejudices. Unfortunately, she had no idea such bias would also arise when seeking access to appropriate care. The first rheumatologist she visited was a Black man. After multiple attempts to medicate bouts of inflammation, the physician eventually gave up and refused to meet with Jasmine. According to Jasmine, he didn’t want to admit it was lupus, even when numerous tests pointed to the syndrome.

“They weren’t textbook conditions, so he wasn’t interested in probing further,” she said.

A second rheumatologist explained that it was a result of low vitamin D. While it was refreshing to gain some clarity, Jasmine questioned if low vitamin D could truly cause all the aforementioned symptoms.

In 2007, she completed paperwork to enlist in the Air Force. Unfortunately, Jasmine was permanently disqualified from consideration when the doctor who administered physicals informed her she was permanently disqualified from the military based on “kidney damage that is possibly caused by lupus,” leaving her defeated and confused.

Jasmine ultimately found a new doctor, and, this time, her husband began accompanying her to appointments. They hoped his presence might help add weight to her concerns and questions, but the same conflicts occurred. In one frustrating example, the provider—tasked with administering steroid injections in her lower back—determined she wasn’t sore enough to receive them. Jasmine had to plead with him until he eventually obliged.

“In order to obtain my injections, I had to tell him: ‘I am the patient and I understand my body more than anyone else. Please address me,’” she recalls.

Sadly, the doses did not fare well for her. Not only did it fail to suppress the inflammation, but the continued use resulted in adverse reactions, which consequently worsened Jasmine’s condition.

Jasmine finally found the answers she was searching for with her current doctor of two years, who she asserts takes time to understand her discomfort rather than discredit it. He also encourages and supports holistic options as well as lifestyle changes to treat her symptoms.

Meditation and other self-management helped ease the stress

A proponent of self-care, Jasmine meditates daily to focus on the present and manage the negative emotions that can often come hand-in-hand with chronic health issues. She also takes daily doses of elderberry syrup, which she says help tame inflammation, prevent headache attacks, and boost her immune system. Other daily supplements include a multivitamin and fish oil, which may also help treat inflammation. The natural ingredients found in these products, she says, have worked better than any prescribed narcotic.

Jasmine also carefully watches what she eats, including abstaining from red meat or chicken. Seafood is typically the protein of choice when any recipe calls for it. Jasmine also keeps her processed foods consumption in moderation as those foods tend to lack nutritional quality and can lead to indigestion. Besides hydrating with water, Jasmine loves Gatorade. The electrolytes help regulate her body’s fluid balance.

Living with lupus is not easy, but it’s not a curse

Over the years, Jasmine has gradually adapted more to life with a chronic illness. It’s not easy in the slightest, but she doesn’t allow lupus to stop her from her responsibilities as a mother or as an active member of the community. However, there are a few things she wishes people understood about health disparities that mirror her experience.

“It’s not a chronic illness issue, but rather a humanity issue,” Jasmine says. “You have to consider people’s experiences when you’re interacting with them. You shouldn’t downplay their conditions to make yourself feel comfortable. Instead, consider researching the signs, treatment options, and demographics to have a better understanding of what they’re going through.”

Jasmine believes her resilience and determination have been the unsung heroes in her fight against lupus. Yet, she says she would be remiss if she didn’t praise her husband of five years and partner of seven years, who has been by her side for the entirety of this battle.

“When you’re afflicted with a chronic illness, you go through the same stages as if you lost a loved one or friend. The first thing I wondered was how it would affect me long-term. I immediately thought my life was over. Little did I know, it was the complete opposite. You can live a fulfilling life if you really take this seriously and take care of yourself. Lupus helped change my perspective for the better. It also helped keep me grounded and focus on what’s important, which is my family, career, and personal goals.”

You are not alone

Lupus is most certainly not a death sentence, and Jasmine encourages anyone who was recently diagnosed to not see it as such.

“Take a deep breath,” she advises. “You’re going to be okay. Train your mind to carefully process the information being given to you at each appointment. It will require a lifestyle change, but these adjustments will ultimately save your life.”

Most importantly, Jasmine says you must learn to love and appreciate your body for all it is doing to keep you alive. For Jasmine, being grounded in that mentality helped keep her anxiety at bay. Though initially Jasmine didn’t have the best luck with health care professionals, she still emphasizes the importance of listening to specialists. At the same time, she encourages patients to conduct their own research to understand their health condition.

Finally, Jasmine suggests joining a network of fellow lupus warriors. She personally has found solace and helpful information through the Lupus and Allied Diseases Association and the Lupus Foundation of America.

“The body is more powerful than you think, you just have to treat it with the respect it deserves,” Jasmine says. “I once believed I wouldn’t be strong enough to handle the sleepless nights, dream-like states, and other debilitating aches. Seven years since my diagnosis, I am so comfortable in my own skin and loving the woman I’ve become in the process.”
—by Vinciane Ngomsi