What It's Like Being a Medical Student While Searching for a Diagnosis

I have not had many physician role models, I’m not sure what drew me to this profession. I can recall many doctors’ appointments where I felt overlooked, brushed off and rushed. I’m currently in my first year of medical school where we delve into the foundation of the structure and function of the human body, we learn how to interview patients and perform a physical exam, and we examine how our health is impacted by our environment. We have not yet begun to delve into the complexity that underlies all of the ways in which our convoluted body processes can go awry. But I knew something was awry in my own body, and had been for some time. Chronic pain, gastrointestinal symptoms, migraines, insomnia, fatigue, anxiety. I had somehow reasoned, despite my knowledge of the human body, that these were all separate issues. Maybe it was just stress?

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

As classes intensified, their time commitment and my chronic fatigue got the better of me. I stopped exercising, telling myself that once my next exam was over I would go back. I didn’t and months passed. Progressively I deconditioned, my pain worsened and anatomy lab and constant studying started to wear on me physically. My knees, my hands, my neck, they just couldn’t handle it. I couldn’t write notes, I could barely find ways to study without intense pain. I finally decided that I should address the joint pain so I called who I thought would appropriately be able to care for this need, an orthopedic office. On the phone with reception I listed off the multitude of joints that were in constant pain and I was told, “You’ll need to set up separate appointments for each of those areas.” I broke down. It was already so much of a commitment for me to find time to get to one doctor’s appointment, let alone six.

Feeling overwhelmed and confused, I ignored my pain for another few weeks before I opened up to one of my mentors who works as a geriatrician. He suggested I see a rheumatologist, as they are used to working with diffuse joint pain. I set up an appointment with a rheumatology fellow who could see me sooner than an attending physician. Despite knowing that I was a medical student, I had an extremely disappointing visit. I felt rushed and unheard, and I was given no methods to deal with my debilitating pain – despite that being their specialty. They said, “You take Tylenol right?” and I confirmed, “Yes, daily.” They replied, “OK, you can keep taking that for pain, just don’t over-do it.” That was all the advice I was given, keep up with the pain method you are already doing, the one that isn’t working. I couldn’t help but think about my classes on doctoring skills and to talk with patients, and how this fellow had used little to none of those skills – let alone try to problem solve and help me with my pain.

Once I realized that I was not going to get any answers, I brought up my hypermobility and how I believed it could be contributing to my pain. I asked that I get worked up for Ehlers-Danlos so they referred me to a geneticist. They had me get X-rays of my hand and told me, “You don’t need to follow-up with us.” They had not even considered it till I brought it up and even then, they didn’t care to deal with it. If it wasn’t for my mother telling me about Ehlers-Danlos a few years back, that she had heard about from a customer at the restaurant she worked at, then I’m sure I would still be here today in pain, without direction. At first, I dismissed Ehlers-Danlos as I believed I could not meet the diagnostic criteria, falling just short. But I felt that even if this were not the case a geneticist could at least see that I was close to the diagnosis and tell me the path that I should take to feel better, being that I was at the very least similar to people with connective tissue issues.

I waited weeks to see the geneticist, all the while drowning myself in literature about Ehlers-Danlos, looking up every study ever published, trying to piece together how I was going to get myself out of this pit of pain. In the process, I worked harder to understand the diagnostic criteria for hypermobile Ehlers-Danlos syndrome (hEDS), and it was then, in limbo waiting for my appointment, scouring the literature, educating myself that I realized I did in fact have hEDS. I walked into the genetics appointment confident that I would walk out diagnosed. The tests were like a ballet I had gone over in my head a hundred times, every question they asked I felt coming, every measurement they made I danced along with in synchrony. I walked out with a diagnosis of hEDS and went directly to a lecture on neurovasculature of the pelvis, still in shock. I didn’t cry about it for about a week until the shock wore off and I realized this wasn’t a temporary problem or anything that could be cured. I can’t imagine how patients who don’t have the access and knowledge of healthcare deal with this. I am someone so intimately involved in it and I can barely cope with the healthcare system and grapple to find ways to feel better every day.

Since that day I have become more acutely aware than ever of my journey through the medical system. I am mindful of the way physicians interact with patients with what many consider an invisible illness, if it does not get to the point that outward assistive devises are necessary. I am going to take care of myself now, working with my primary care physician who trust that when I say I need physical therapy or an echocardiogram that I am in fact right. One concept has come up in my doctoring skills course that I understand more than ever, that the patient is the expert in their own health. Nobody knows what I am going through better than me. When I am a physician, my patients will know their health better than I ever will. There are two thing that will be different for me rather than the physicians who have overlooked me: I will listen to my patient’s story because it is your perception that matters more than mine – and zebras exist, so I cannot write people off as something common just because it is easier because that is not helping anybody.

Shortly after receiving my diagnosis, I took to Facebook and found groups of people who were also living with EDS and a local support group. It was not a surprise to me that within these communities there were numerous individuals who were not happy with how they had been treated in medicine, asking questions like, “Does anybody know a doctor for ‘X’ that won’t write me off?” or, “My doctor had no idea what EDS is,” and, “I need hacks for this, what my doctor suggests isn’t working for me.” It was widely accepted that many medical professionals lack of understanding of EDS and cannot always provide the most well-informed guidance but the masses of those who have made themselves guinea pigs and some who did have knowledgeable physicians may be able to provide some insight. While all the support groups urged that people turn to physicians first for care, they provided guidance so that patients can bring information to their physician in the hopes that they will listen and guide them along the path to improved health.

I am still learning to accept my limitations and how they will affect me in my future profession. Residency will be hell, on my feet, more sleep deprived than I already am. Will I be too fatigued to make the right decisions? I wanted to be a surgeon, that is a pipe dream now. How could my joints handle the back-to-back surgeries on my feet? The fact is they can’t and I’m still not OK with it. I used to be gritty, work through the pain, never let it stop me. But now I just can’t. Maybe it won’t always be this way but this is my reality in this moment in time.

My brain fog and migraines already hit me at bad times where peak mental performance is necessary. Will that happen in practice while I’m trying to navigate a patient’s complex health issue? Despite all this at least I know that while many others become cynical and do the bare minimum, I will realize how detrimental that could be because I have lived it. I hope to be a better physician than that one day, maybe caring for some of you zebras and those that feel invisible to the medical profession.