Problems on the long and twisted road to a sarcoidosis diagnosis
Labeling this disease, and even caring for it, can involve bias and confusion
When I learned that an upcoming episode of the “AiArthritis Voices 360 Talk Show” would focus on the difficulty patients have in getting diagnosed, I jumped at the chance to co-host. After all, it took me eight years to get my sarcoidosis diagnosis, starting from when I began searching for answers to my symptoms. I have lots to say on the topic.
The podcast is hosted by Tiffany Westrich-Robertson, co-founder and CEO of the International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis). For this episode, Tiffany and I were joined by Danielle Dass, a patient advocate on the board of directors at Ride the Omnibus. While each of us has a different diagnosis, we all had to wait too long to get it.
By the time I sought help, I’d already passed through my denial stage. I couldn’t fool myself anymore — the pain, severe fatigue, and insomnia were telling me something was wrong and I had to do something about it. But doctors wasted four years of my life, dismissing me because, in their eyes, I “looked fine.”
Diagnoses don’t come easy for countless reasons — and while some are valid and understandable, others are wrong, unfair, and even dangerous. All too often, doctors don’t take our concerns seriously for superficial reasons.
How bias can affect our care
Many kinds of bias can affect medical personnel. Here are three.
Age: Some doctors, it seems, are looking for a Goldilocks patient. When we’re too young, we’re often told we’re merely experiencing “growing pains.” A few decades later, we’re told it’s “just a part of growing old.” Some have even considered the mid-40s problematic; even in those years, we face obstacles.
Gender: Historically, women’s health issues have often been dismissed, in some eras referred to as simply hysteria. The sad (and infuriating) part is that gender bias in medical care still happens today. Our symptoms are too often called psychosomatic, and we’re told to seek therapy and go without tests to determine a physiological cause. Other marginalized groups face similar biases.
Weight: Other doctors are unable to see beyond a patient’s weight. If we’re too heavy, we’re judged as lazy and blamed for our own illnesses. Even if extra weight is the result of medication or the illness itself, the pounds often deter doctors from finding the root cause of the problem or treating it appropriately.
In planning our episode, Danielle said it best: “You shouldn’t have to earn a physician’s interest by doing something before they will agree to investigate.” Amen, sister!
An already challenging process
Of course, getting a swift diagnosis can also involve legitimate challenges that are, nonetheless, frustrating. The process of identifying sarcoidosis, for instance, is considered a “diagnosis of exclusion,” meaning doctors figure out all the conditions it isn’t before finding what it is. “Normal” test results and inconsistent symptoms that mimic other conditions can make the process more difficult.
Further, many general practitioners aren’t familiar with sarcoidosis, so they don’t order the necessary diagnostic tests. A medical student I met at an awareness walk said she’d only seen one paragraph about sarcoidosis in all her years of schooling. She came to the event to meet patients and learn more about the disease — from us. That was a refreshing point of view, but it’s not one we can expect.
After four years of rotating misdiagnoses, I was finally told I had sarcoidosis based on bloodwork, a chest X-ray, and a skin biopsy. But in the years since then, my care hasn’t been straightforward.
Because sarcoidosis involves multiple systems and organs, each area is addressed by its own specialist. Often, these specialists are not well-versed in a disease as rare as sarcoidosis, and communication between physicians is often lacking. That leads them to treat each symptom as its own illness, rather than the complex condition it is.
Sarcoidosis is also a disease of inflammation. As that inflammation builds, it forms granulomas, or clusters of cells that can interfere with organ function. Left unchecked, these granulomas can harden, causing fibrosis or scar tissue. This progression can lead to permanent damage and organ failure, so delays in treatment can be particularly problematic.
And while sarcoidosis isn’t a psychosomatic disease, it can have psychological repercussions. Not only do patients grieve the loss of our lives before the disease, be it work, family, or socializing, but we may also feel lost during the search for a diagnosis. We don’t know where to turn or what to do, and even our greatest supporters are typically unable to help.
It’s not the disease itself we’re longing for — we already have it, after all. It’s the answer, the diagnosis, that we need. The name is a starting point. From there, we can learn. From there, we can cope. From there, we can connect. From there, we can hope.
You can hear a full discussion of this topic once my episode is released Sunday, Oct. 1, wherever you get your podcasts.
Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to sarcoidosis.