Becky Hosey: From Healthcare Professional to Patient to Advocate

Meet Becky Hosey, a medical professional who has practiced chiropractic care for two decades and as a physician assistant for the last 14 years. Becky has spent her career focused on musculoskeletal medicine, interventional pain medicine, and the brain-body connection. She is passionate about advocacy, self-empowerment, medical research, advanced knowledge, and treatments to support her patients. Becky never thought she would have to apply these to her own life in order to not only survive, but to thrive again.

The transition from professional to patient

In 2015, at age 37, Becky was working hard, raising a 5 year old son with her partner, and thriving in all parts of her life. Suddenly, she developed severe weakness, joint pain, swelling, and debilitating fatigue. She was a previously fully functional individual who could no longer make herself a sandwich or use the restroom alone. This was terrifying to Becky and her family.

Becky went to her primary care physician, a doctor she’d only met once but would come to see more than a dozen times that year, and was told she likely had a viral infection. She received some generic instructions to take care of her body and was sent home.

Those instructions didn’t work. In fact, nothing Becky did worked.

She went back to her primary care physician, where she desperately explained that she couldn’t work, she couldn’t function, she couldn’t keep her eyes open while driving, making her a risk to herself and others, and that as a person and a medical professional she knew something was seriously wrong with her.

The heartbreaking response Becky received?

“I don’t think you want to get better”

Becky was experiencing what many call “medical gaslighting” – the feeling of not being taken seriously, being treated unfairly or unkindly, and being dismissed by healthcare providers. Many patients report being told their symptoms are normal for their stage of life or “it’s all in their head.”

Becky was astounded when her labs came back all over the place – things like her platelets, neutrophils, and inflammation levels all came back out of range – objective evidence that there was something happening inside her body, and her doctor ignored them.

As Becky examined her own lab results and symptoms, she realized this seemed like a situation for a rheumatologist. Becky’s primary care physician didn’t agree and she ignored Becky’s professional medical knowledge. So, Becky decided to go on her own, without a referral, to a rheumatologist. This was 7 months after Becky’s symptoms started, and her life had totally turned upside down.

Becky was shocked when the rheumatologist not only disrespected her, but didn’t do a thorough exam of Becky or the labs she brought in. The rheumatologist told Becky she was perimenopausal, and that she had a gynecological problem stemming from an ovarian cyst.

She was diagnosed arbitrarily with fibromyalgia – but she knew that diagnosis didn’t fit. She didn’t have any pain. She only had weakness.

Her fierce advocacy kicked in at this point in the diagnostic journey.

Becky went back to her primary care armed with two index cards – one listing her debilitating symptoms, the other listing the lab tests that needed to be run to rule out some conditions. Her primary care physician finally realized Becky wasn’t leaving.

Advice: Become an empowered patient. Don’t take no for an answer.

Sure enough, Becky had positive anti-SSA antibodies, which is a clinical textbook lab result for Sjogren’s. Yet, upon seeing these results, Becky’s primary care doctor told her there was no way she had Sjogren’s and that she should follow up with her gynecologist and gave her an empty promise that she could retest her in six months.

At this point, Becky took her care even further into her own hands. She made appointments at Cleveland Clinic and Penn Medicine. Although the appointments were months out, she knew they were her best chance at getting diagnosed.

In November 2015, nine months after her symptoms started, Becky walked into Cleveland Clinic armed with her timeline, symptoms, lab results, and history – and met with the first provider who acknowledged her having Sjogren’s Syndrome. She followed up with her appointment at the Sjogren’s Center at Penn Medicine, where she’s still a patient today.

8 years later – what Becky thought was her greatest trial turned into her greatest triumph

For Becky, it started with coming to terms with her own physical disabilities, secondary to the symptoms of Sjogren’s. Next, it morphed into: How could she take what happened to her and help others? This turned into writing a book, telling her story on social media, speaking at  community lectures, sharing stories with future healthcare providers, and helping patients find new ways to feel empowered.

Advice for Physicians

Becky is watching medicine move the patient further away from the center of care model. As a healthcare professional, Becky reminds physicians to focus on the patient in front of them. They’re vulnerable and they’re scared. They’re sharing their truths with you. They came to you for help. Listen to them and help them.

Advice for Patients

Self-advocacy on your healthcare journey is critical. If enough patients stand up and beg for different care, the system can change. If you feel your doctor is dismissing you, say something. Patients need to feel empowered to say, “Listen to me and take me seriously” or “I’m very sick, I don’t feel like you’re listening to me. I need your attention.” We often have minimal face-to-face time with our healthcare providers, and we must we must make the most of that time.

“Trust your instincts and continue to stand up for the care you require and deserve”

 Becky’s experience navigating the medical system in search of a diagnosis is not uncommon. On average, a person will see 4 physicians over 4.5 years before being given a diagnosis of an autoimmune disease, and that journey is often filled with the frustration of not feeling heard. Becky’s final message to anyone going through a similar situation is: Always remember that you have the deepest understanding of your own body and personal history. Trust your instincts, continue to stand up for the care you require and deserve, and be prepared to walk away from any healthcare provider who undermines your credibility.