By Rebecca Hosey

I had a sudden onset of rather subjective symptoms, like fatigue, muscle weakness and joint pain. I am sure some of you are thinking, hmm, this sounds familiar. I also had a laundry list of other complaints including fevers, dry eye and cough; but by far the most debilitating symptom was the fatigue, which caused me to be bedridden at times. Being a medical professional with deep knowledge of the inner workings of the health system, I never thought that I would be dismissed at my own medical appointments, but this is exactly what happened.

Even though my medical providers did not believe me, I knew something was seriously wrong. Although I had yet to be diagnosed, the blatant affliction was a critical case of medical gaslighting. The searing sensation diffused through me after being told, You don’t look sick and I don’t think you want to get better.

After a twisted, nearly ten month expedition, I was officially diagnosed with Primary Sjögren’s. I had to drive my way through blockades and barriers, shoving hard every step of the way in order to reveal the diagnosis that I knew existed. Along the way, I was forced into the deepest part of myself, ultimately finding a place that I never even knew existed. This space is where I harvested the strength to rise after falling.

I felt fortunate that this elusive monster was identified after a matter of months, because the average time for a person to get diagnosed with Sjögren’s was then 7-10 years. Grateful that my medical education afforded me the ability to ask for the right tests and referrals; I wondered how those more disadvantaged could ever successfully navigate such a convoluted health system?

Fairly early on in the illness, I had an epiphany moment after being dismissed by my then primary care provider. While there had been many of these such encounters, on this particular day, it finally broke me. I could feel my eyes welling up, but refused to shed any tears in front of this provider, as it would have given her more ammunition to keep pushing an antidepressant prescription on me, something she had been persistent about over the last several visits.

Overtaken by an intense sadness for myself, tears began streaming down my face as I exited the building. However, mere seconds into this overwhelming emotion, I experienced an even more potent collective sorrow, thinking about all individuals who have been medically gaslit, especially those already marginalized in our society. With this extreme sadness for the shared suffering, I also felt a pit of grave disappointment in my stomach. My profession of medicine had not only betrayed me, but countless others who were only guilty of seeking help in their time of need.

We can all appreciate that it is bad enough to be sick, but there is a special agony when we are not validated as human beings. I will never forget that day in the parking lot, leaning against a small tree, sobbing. While there were so many uncertainties in my head, somehow through the murkiness, I developed an exceptional clarity. At that very moment, I knew two things without any hesitation: 1. That I would find my diagnosis. 2. That I would devote the rest of my life helping others avoid the unnecessary pain of what I was going through.

I did not know exactly how it would all unfold, but this is when the initial thought of a future book began bouncing from synapse to synapse. Regardless of the details, I knew my life would be forever changed that day and it has.

After I was diagnosed with Sjögren’s, it was another education to discover that my disease was misunderstood in both the general public and medical communities, as many invisible diseases are. You may or may not be aware of this, but there is still not one FDA approved medication for the systemic symptoms of Sjögren’s, even though Dr. Henrick Sjögren identified this condition nearly 100 years ago. This is the tragic result of many factors, including society’s influence on medicine. Even though I had always been a very compassionate and empathetic health provider, I just did not get it, until I got it.

I started writing a book at the end of 2015, which began with very modest detail jotting on post-it notes and other scraps of paper, describing my encounters of the year. It evolved into a real manuscript after 2020, following yet another medical mystery, which left me burning from more rounds of gaslighting.

Actually, several routine gynecological conditions were missed, which ended up threatening my very existence. In the heart of the pandemic, I had a severe anemia caused by a uterine fibroid, which was misdiagnosed for years. After a nearly 5 hour surgery, I was subsequently diagnosed with stage 4 endometriosis. Interestingly, my pelvic pain began in 2015, along with the Sjögren’s symptoms, but it was disregarded by multiple gynecologists.

The battles were so unexpected, with both my body and the medical system, but were necessary igniters, as they created a great shift of my entire being, finally revealing my life’s true purpose. Ultimately, I knew that in order to fulfil my mission to help others, I must not only come to terms, accepting my diagnoses and subsequent disabilities; but would need to actually embrace them as well.

This was the real journey for me that took many years. Once I crossed these thresholds, this genuine acceptance is what brought me peace and clarity to complete the writing. My book is titled Girl on a Gurney: Trading My White Coat for a Hospital Gown. In these pages, I meet readers from both sides of the gurney, as medical professional and patient with chronic disease.

Individuals are led on a voyage of my personal medical mysteries, but it really functions much more than just a memoir. It provides tools for readers to improve their own navigation of a convoluted and non-patient friendly health system. It also reveals a unique perspective on healing and peaceful living amid chronic illness. Girl on a Gurney is not yet in print, but I will provide updates on my website, news mailings and social media pages when a date is known!

While we certainly do not have control over receiving a chronic disease diagnosis, we do have complete management over our perspective and actions!

Let this blog help you on your journey to becoming the very best version of yourself!

Thank you for reading!

Be well,

Becky

If you want to learn more about me or Girl on a Gurney, please visit: www.rebeccahosey.com

Disclaimer: This blog will not provide diagnosing, or specific medical advice. As with any medical intervention, you should always speak to your healthcare provider prior to initiating.