Jazmin Gibbons
It took Jazmin Gibbons more than two years – and a move from New Orleans, Louisiana to San Antonio, Texas – to receive a Sjögren's diagnosis and appropriate medical care.
“I was 34 years old, breastfeeding my little boy, and I remember having a cold that I just could not shake. I started getting incapacitating vertigo, tingling, numbness in my limbs, but I couldn’t pinpoint what was causing it all,” she said. “I’d go to the doctor, but they’d say, ‘You just had a baby’ and ‘It’s allergy season.’ They gave me the runaround and blamed my hormones, but never suggested running any tests.”
After reporting numerous symptoms to multiple doctors, Jazmin was referred to a neurologist. And after running a single autoimmune panel, this neurologist found part of the answer to Jazmin’s years of symptoms: The test came back positive for lupus. Still, this didn’t solve everything.
“Even though this narrowed it down a little bit, it didn’t make things easier because doctors were telling me that in order to have Sjögren's, I had to have dry eyes and dry mouth, too,” she said. “I actually went through two or three rheumatologists before I found someone who knew that Sjögren's could show up more neurologically in some patients.”
It’s taken trial and error for Jazmin to find her current medication. She’s confident that it’s taking care of 90% of her symptoms – and she’s confident that that success isn’t solely owed to this particular therapy.
“I’m putting in so much effort on my own, with nutrition and exercise and a focus on lowering my inflammation,” Jazmin said. “All of that helps this medicine work up to 90%. But fatigue is still my companion nearly every day; it’s the most debilitating.”
By putting all of this effort into her own health, Jazmin finds that – through no fault of her own – she has limited energy left when it comes to her historically active parenting style.
“I was a very young mom when I had my oldest, so I had all of the energy in the world. I always had activities, I always had an organized plan,” she said. “I still try to be a hands-on mom for my 6-year-old son, but I don’t have the same energy now, so I’m thankful for the example that his older siblings are setting and for the support of my husband.”
Understandably, this entire experience has impacted Jazmin’s mental health. While contending with her undiagnosed symptoms, Jazmin began having panic attacks. Similar to the medical disbelief she faced in her Sjögren's journey, she found that doctors were recommending deep breathing exercises when she knew she needed to take anxiety medication.
“I don’t think doctors fully understand the mental health part of chronic illness. When you get a disease like this, your life 100% changes,” she said. “They only focus on the single part of your body or disease that they specialize in, and they don’t address your mental health at all. Today, I regularly tell my rheumatologist that they need to partner with mental health professionals to better support their chronically ill patients.”
For support, Jazmin has continuously turned to her family and friends, as well as her church community and her online Sjögren's friends. Today, at forty years old, she’s intentionally vocal about what she needs, making a point to let others know if she’s not feeling up to daily tasks, like when she’s too dizzy to drive and needs someone else to drive her kids to school.
Six years into her Sjögren's journey, Jazmin is well-versed in the ways that this chronic illness can develop over time. It’s only now that she’s experiencing dry mouth and dry eyes, two symptoms that are believed by many to be a cornerstone of the disease. It was the absence of these two symptoms that originally kept Jazmin from receiving her initial Sjögren's diagnosis earlier.
She’s also grown intimately familiar with the balancing act required by chronic illnesses.
“It’s a balance between taking care of yourself so you can feel better, but then needing to resist doing too much once you are feeling a little better,” she said. “I don’t think I’ll ever feel 100% myself again, but I do my best to be creative and adjust my expectations. If I can’t physically be there for someone, I will send a message or a card because I can do those things. For me, it’s important to voice all of this because I know that my Sjögren's is invisible – people won’t know what’s needed unless I name it.”
