As a clinician, you likely do not have the luxury of playing “Dr. House.” Patients enter your exam room, long story in hand, with a litany of mysterious symptoms involving every bodily system, and you were already massively overbooked. Your patient leaves the encounter no closer to answers despite your best attempts which involved you spending far more time on their assessment than your crazy office schedule allows. Your staff becomes frustrated (because your clinic is again behind schedule). Your patient leaves feeling unheard, but you, the clinician, are far from satisfied. But what’s a busy clinician to do? If your patient has a connective tissue disorder like one of the Ehlers-Danlos syndromes, you can help without becoming an EDS expert — although that would be OK, too. How do you respond when you hear a story like this one from my patient and coauthor, Lauren? “I think the chronic illness chapter of my book began when I lost the ability to walk as a junior in high school. I had experienced numerous injuries and a concussion but attributed them to intense dance practices and being in the wrong place at the wrong time. Losing the ability to walk, however, was a whole other story. So, I like to say the journey began with the unexplainable in an AP Psychology class in the fall of 2015 when I walked in as a student and was carried out as a patient. I was just as confused living this as you are hearing it. I had walked in that day, and 30 minutes later, it felt like nothingness in my legs — like I couldn’t feel my feet on the ground or my legs touching the chair beneath me. I fearfully anticipated the bell ringing at 8:06 and how I could possibly verbalize this foreign sensation. As it hit, so did the tears. Fighting through the tears, my teacher approached me with empathy and reassuringly lifted me to my feet, beginning the several hundred-foot journey of supporting most of my weight to the front office.” So what happened, you must be thinking? Why couldn’t she walk? Lauren’s family lived with confusion, panic, and uncertainty for the next six years and never received a satisfying explanation despite numerous medical visits all across the country. Some doctors attributed Lauren’s symptoms to stress, whereas others threw up their hands, saying they didn’t know, and others labeled it as conversion disorder. But Lauren’s mother knew something was amiss and kept pushing for answers. When Lauren came to my office as a 16-year-old, she had been diagnosed with postural orthostatic tachycardia syndrome (POTS) and a few other chronic illnesses. By the end of the appointment, she left with a diagnosis of Ehlers-Danlos Syndrome (EDS). Lauren stated, “Some might feel overwhelmed by a diagnosis of a chronic illness, but to me and many others who walk through the battle of being undiagnosed, a diagnosis is the end of not being believed and the start of being affirmed and finally finding treatment. Having clarity on the symptoms I was experiencing was everything.” The sad part is that Lauren’s story is all too common in the EDS community. Even as a physician it took me until my mid-40s to be properly diagnosed with EDS (despite having shown lifelong signs). Lauren’s journey mimics the common path to an EDS diagnosis: battling symptoms, not finding answers, frequent ED visits, being misdiagnosed, being disbelieved, being told you are too sensitive, too anxious, or “just” depressed. But hopefully, just hopefully, you finally find a doctor who believes you and fights to find the cause of your symptoms as well as pursue treatment to improve your quality of life. As Lauren’s physician, I was lucky enough to be that doctor. I had time on my side — time to spend about 16 hours pouring over Lauren’s outside medical records before she presented for her extensive four-hour initial appointment. Time enough for each family member to share their perspective and, most importantly, hear from Lauren herself. Lauren presented to my clinic as my first patient (ever) in my newly formed solo private micro-practice dedicated to serving patients with hypermobility disorders and connective tissue disorders like EDS. I had the great fortune of learning enough about Lauren at that first visit that I determined EDS was underlying and unifying of her symptoms. Certainly, not everyone can practice this way, seeing two to six patients per day diagnosing the undiagnosed. Still, anyone can be that someone who listens generously and compassionately, attempting to gain an understanding of the suffering the patient in front of you is going through. Lauren’s wheelchair collects dust as she pursues a college degree after taking a medical leave to focus on her health. She was able to try new treatments during this time, and her health has significantly improved. She has returned to living a typical lifestyle as a college student and will be graduating from Marquette University in May 2022. Lauren says it would have helped her immensely to hear any of these things from her physicians during her diagnostic odyssey: “I’m sorry you’re going through that.” “I can’t fully understand what you’re going through, but that must be challenging.” “How can I be there to support you?” Which of these will help your next patient suffering from mysterious symptoms?” You can support your patients even when there is no cure. The jig is up. Patients know we are imperfect humans. Sometimes they will know more than we do. It’s time to face the facts. But our patients still need us, and we do have the ability to improve our physician-patient interactions. Admit that you do not know everything. Assure them that you will fight for them to get the care they deserve. That is a gift you can give that no one else can take away. Source
