When Becky Hosey became seriously ill at age 37, she already had years of clinical experience as a licensed physician assistant and chiropractor. She was also working and raising her 5-year-old son, but her professional background did not prepare her for how difficult it would be to get answers about her own health.

“I had profound fatigue, profound. I mean, I was unable to even walk to the restroom without help,” Becky said. “I had joint pain, I had muscle weakness. My muscles felt like a rag doll. I just couldn’t really even trust my legs to stand up for any long period of time.”

She also experienced dryness, a dry cough, and dry eyes. Becky was initially diagnosed with an unspecified viral infection, but she felt that explanation did not fit what she was experiencing.

She Kept Pushing for Answers

Becky said her primary care provider refused to refer her to rheumatology, so she arranged a self-referral to a local rheumatologist. That appointment did not bring the answers she hoped for.

“This rheumatologist was actually more dismissive than my primary care provider,” Becky said.

Becky had tested positive for an anti-Sjögren’s-syndrome-related antigen A (anti-SSA) antibody associated with Sjögren’s disease. Even so, she said the rheumatologist told her, “There’s no way you have that disease.”

Becky kept looking for answers. “So I went and found the most reputable rheumatologic [facility],” she said.

Finding a Provider Who Listened

Her search took her to a larger clinic. Before the appointment, Becky created a five-page timeline showing when her symptoms began, which healthcare providers she had seen, and the dates and results of her lab tests.

“I handed it to the provider… and he looked it over quick, and he said to me, ‘What can I help you with?’ And I said, ‘Well, I’m here for a diagnosis.’ And he [looked it over and] said, ‘You already have one.’”

It took 10 months for Becky to be officially diagnosed with Sjögren’s and receive her first treatments. The experience later helped shape her work as a health advocate.

She went on to share her story at educational institutions, professional conferences, and legislative meetings in Washington, D.C., and New York.

What Becky Learned About Finding the Right Provider for Her Sjögren’s

For people with Sjögren’s looking for a healthcare provider, Becky suggested starting with people who understand the local medical community. “Who better to help you find a Sjögren’s specialist than someone with Sjögren’s in your area,” she said.

She also recommended talking with friends and family, researching providers, reading reviews, and watching provider videos when available. Bringing a trusted friend or family member to an appointment could also help you get another perspective on how the provider communicates.

“Who better to help you find a Sjögren’s specialist than someone with Sjögren’s in your area.”

— Becky Hosey

Once at the appointment, Becky emphasized being clear about what you need. “Be direct with the provider. So ask for what you need,” she said.

Above all, Becky encouraged others to keep searching for a provider who feels like the right fit. “Never give up. Keep pushing forward. Find a provider that will take the journey with you,” she said.