I struggled for years to get a Sjogren’s diagnosis. Like many patients, I was told that my symptoms were caused by anxiety and stress. It often surprises people when they learn that even medical doctors can experience dismissive treatment when their doctors do not understand what is causing a complex array of seemingly unconnected symptoms.
The long road to diagnosis.
My first obvious sign of Sjogren’s occurred at age 18, when I was diagnosed with severe dry dyes and corneal abrasions. However, it was not until 34 years later, at age 52, that I finally fulfilled the classification criteria and received a formal diagnosis.
There were clues all along the way and red flags that were ignored. During my teens, twenties, and thirties, I lived with unusual fatigue, morning stiffness and widespread pain. These symptoms, together with severe dry eyes, should have suggested the possibility of Sjogren’s. More symptoms accumulated. During my thirties, I developed burning pain in my feet, multiple gastrointestinal (GI) problems, constant sinus infections, and dry mouth. Despite seeing multiple specialists for dry eyes, sinus infections, and GI manifestations, none of them considered the big picture. Because Sjogren’s medical education then (and now) was largely non-existent, even if they did think outside their specialty box, they were not trained to recognize my classic presentation of Sjogren’s.
Instead of receiving a proper diagnosis, I was told that my symptoms were caused by fibromyalgia, irritable bowel syndrome, and stress. These explanations seemed logical at the time because I was under extraordinary stress, supporting a husband through five years of cancer treatments, raising young children, and working full time. Looking back, I realize I downplayed my own illness and needs in the face of those immense challenges.
For years, I relied on lifestyle measures to maintain a surprisingly high level of function, given my increasing fatigue and pain. However, at age 44, everything changed. A sudden and severe downturn left me bedridden for 16-20 hours a day. Extreme fatigue, lightheadedness, cognitive dysfunction ("brain fog"), constant headaches, joint pain, and flu-like symptoms became my reality. I could not stand for more than five minutes without feeling like I was going to faint. I could no longer work, care for my children, or even fully care for myself. I lost my career, financial stability, and almost everything I loved to do.
Many tests, no answers.
Despite this catastrophic loss of health, there was no sense of urgency from my doctors to figure out what was wrong. I spent more than a year visiting specialists. I paid thousands of dollars for second opinions. No one had answers..
When all my standard test results were normal, my clinicians felt they had ruled out serious diseases and concluded that stress and anxiety must be causing my symptoms. At this point, my main source of stress and anxiety was from having an undiagnosed illness that was being dismissed as stress. One doctor suggested that I take up a hobby to distract myself. This was insulting and terrifying; I was losing everything I worked so hard for. I felt abandoned by my own profession.
Other than my internist, my clinicians did not believe my reports of how sick I was. Like most people with Sjogren’s, I look well and can present normally for a medical appointment, only to go home and collapse for hours from the effort.
While I am grateful that my internist agreed I had a physical illness, she did not know what was wrong or how to help me. Being given psychological explanations for such severe symptoms crosses the line from “I don’t know/can’t help” into gaslighting. This experience taught me to hide my emotional distress from medical practitioners. I learned that communicating even an inkling of my despair would trigger further psychologizing of my symptoms. Hiding my reality added another layer of stress to an already overwhelming situation.
Finding my own answers
After a year of normal test results, my doctors stopped looking for answers. I realized that I was on my own, left to figure out my “medical mystery”, which should have been recognized years prior. Despite being too ill to sit up or concentrate for more than 15-30 minutes at a time, I was able to research the medical literature from my laptop in bed. I became increasingly convinced that Sjogren's was the culprit, even though my blood tests were normal.
See 12 Reasons why people don’t get diagnosed for the details of how I was able to eventually get diagnosed and treated for Sjogren’s.
Community disbelief and dismissal: a hypochondriac with dryness
While it was painful and frustrating to be treated dismissively by doctors, the lack of support from friends and family, was devastating. I expected that the people close to me would know that I was resilient, resourceful, and the last person to feign illness. If anything, I was, and remain, prone to downplaying my symptoms. Several of them searched the internet for Sjogren’s, only to find the typical mischaracterization of Sjogren’s as a mild dryness syndrome. I was told I was exaggerating my symptoms and just needed to adopts a positive attitude, try harder, or eat their idea of a “good” or healthy diet. Other people disappeared, including a longstanding (now ex-) friend who told a mutual acquaintance that I must be making my illness up, because “How can so many things go wrong in one person?”
Sjogren’s is a lonely disease.
Year after year, I was stuck at home while my then husband and sons went away on vacations. This left me with a deep and persistent ache for the childhood memories I will never share with my sons. Now that they are adults, I am too sick to travel to visit them.
To this day, no one outside the autoimmune community has ever asked me what it is like to live with these losses, or for that matter, how I cope with feeling so sick every day. If I mention these things, my comments are met with silence, “happy talk”, or a quick change of subject.
Sjogren’s Advocate: making the best of a lousy hand of cards
After my health became more stable, despite continued extreme limitations, I decided to use my personal experience, research skills, and medical background to provide people with Sjogren’s with the same tools that I used to advocate for my own diagnosis and care. Working on Sjogren’s Advocate is deeply meaningful, but it demands careful management of my limited time, energy, and financial resources.
Honestly, if I had a more moderate version of Sjogren’s (and POTS, chronic migraine, and spondylitis), Sjogren’s Advocate might not exist. If I were not so sick, I would work part-time, travel, and pursue my hobbies. These, and a solid retirement account, are all beyond my reach.
Knowing that Sjogren’s Advocate and my other advocacy work has helped hundreds of people is immensely satisfying. I have chosen to use what I have to do what I can do, which is advocate for better Sjogren’s care.
