“I’m probably just crazy, but…no one can figure out what's wrong with me.”
Written by: Leah Bush
“Leah, the radiologist is on the phone for you.”
Working in the ER, you usually don’t get a call from a radiologist unless something is very wrong, so…I was alarmed. I had just sent a 60 something year old woman to get a CT scan to look into her incessant abdominal pain.
“Hey, Leah. It’s Dr. X. On your patient. It looks like she’s got a 16th autoimmune disease with stage 4 fibromyalgia,” he laughed. “Nah, I’m joking. It’s completely normal.”
The patient had been diagnosed with several autoimmune disorders such as rheumatoid arthritis, Sjogrens, and Crohn’s disease already. Calling to give me a fake report and joke about her disease processes was in pretty poor taste. But to some healthcare workers, patients with autoimmune diseases induce frustrating sighs and eyerolls behind closed doors.
Autoimmune diseases are clinical syndromes caused by the body activating an immune response when there is no discernible cause. Basically, your body gets confused and attacks itself for no reason. There are many known and documented autoimmune diseases, but on average, it takes about 4.5 years to actually receive a diagnosis.
During that extended period of time, people may suffer from multiple flare ups of the disease prompting doctor’s visits, lab work, imaging, lost income from sick days, and multiple incorrect diagnoses resulting in wasted treatments. Patients also tend to go through at least 4 doctors until they DO get an accurate diagnosis. How frustrating and exhausting is that?
Most symptoms of autoimmune disease are ambiguous like crippling fatigue and generalized joint pain. These symptoms can be due to any number of reasons, and frequently they are written off as “all in your head.” Patients receive diagnoses of anxiety, panic attacks, and depression regularly. Additionally, women are disproportionately affected by autoimmune diseases compared to men. For example, women are twice as likely as men to develop rheumatoid arthritis, 3 times more likely than men to develop multiple sclerosis, and 9 times more likely than men to develop lupus. All in all, 78% of people with autoimmune disease are women.
Add in the fact that women are routinely written off as histrionic and anxious anyway, it is not surprising that it can take an average of 4 years and 4 doctors to receive a diagnosis if you have an autoimmune disease..
Why are these diseases important?
Well, many of them can attack your vital organs over time causing kidney failure, heart disease, or liver failure. Not to mention the decreased quality of life for the person living with the disorder.
Even when you have all of the signs of an autoimmune disease, every single test may still come back negative. That must mean there’s nothing wrong, right? Clean bill of health, except for your crazy hypochondriac brain!
The unfortunate truth is that there may not be a test capable of detecting whatever is going on in your body…at least not yet. We do have a LOT of tests that we can do to determine these diseases, but many people are what we call “seronegative.” It means that the blood test didn’t show the factors that we know to look for. That we *know* to look for.
For example, about 20-25% of RA patients are seronegative. 5-10% of scleroderma patients are seronegative.
Healthcare providers and researchers are trying to catch up to autoimmune diseases and how they work. In fact, a new lab test was just approved by the FDA this summer that is able to detect an antibody for lupus and scleroderma patients who are, well WERE, seronegative. An entire group of people who felt that their body was betraying them, and could never find evidence of why or how, became validated through the development of that test.
Again, I know I sound like a broken record at this point, but the most important thing to take away from these articles is that you need to know your body and speak up when something is off. Don’t write yourself off even if a healthcare provider does. Even if 4 healthcare providers do. Even if every test seems to be telling you it’s all in your head. I’m all for trusting the experts, and healthcare providers are experts when it comes to many things. But you are the only expert when it comes to you.
About the Author
Leah Bush - ElleTwo Contributor
Leah Bush is a Nurse Practitioner with over a decade of clinical experience in critical care, cardiac care, emergency medicine, and primary care settings. Her professional identity is rooted in her upbringing as the daughter of a pastor and cardiac nurse educator, experience in varied medical fields, and personal journey as a mother and kidney transplant patient. She has a passion for patient education and a desire to give every patient the care that they deserve but are often denied. This holds particularly true for her female patients, who are often the most overlooked and misunderstood patients in our healthcare system. Outside of work she is a lover of music, documentaries, and LSU football. Her personal heaven is warm buttered bread and a long nap, and her personal hell is matching children’s socks out of an endless sea of laundry. She’s been married to her husband Tony for 11 years, and they have 3 children together - James (10), Rebekah (4), and Henry (2). They’ve recently added another member to their family: a black-and-white house cat named Alfie.