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When a Doctor Promised He Wouldn't Give Up on Me, but Eventually Did

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He was my third neurologist, and I was entirely disenchanted with the medical profession by the time we met. The irony of this did not go unnoticed by his medical assistant, who politely asked, “but aren’t you a nurse?” as he attached the blood pressure cuff to my arm. Yes, I am a nurse. This fact only added to my frustration however, as I hadn’t been an actively working nurse since I’d been in an accident six and a half months prior. A car accident, on top of an underlying diagnosis of Ehlers-Danlos syndrome.

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

Ehlers-Danlos syndrome (EDS) is a type of connective tissue disorder, and is classified as one of the more rare diseases. In my case, faulty connective tissue prevents my joints from remaining in proper alignment. To some, I may appear to be harmlessly “double-jointed,” but the reality is that I am subjected to any number of partial or total joint dislocations in a day. And because it’s rare, there are only a small handful of specialists in the world that truly understand the disease process.

Because of my EDS, when the car behind me made impact with mine, my neck did not go backward, then propel forward again before stopping, as is traditionally seen in whiplash cases. No, when the car behind me made impact with mine, my neck was forced into a series of erratic backward and forward movements. In that moment, I was reduced to a bobblehead figurine – the type you see on office desks that playfully bobble their heads in all directions when met with even the lightest touch of fingertips – and I’d just been hit by a car. I was the perfect recipe for disaster: a misunderstood disease on top of a fender bender.

Which is how I ended up on my third neurologist, and entirely disenchanted. Despite that, I remember being immediately drawn to this physician when I met him. It was as if he came straight out of a medical textbook from the chapters on bedside manner and relating to patients. He kneeled down in front of the chair I was sitting in and held my hands in his, not unlike the time my husband proposed. He wasn’t afraid to look me in the eye, and in his eyes, I saw compassion. In his eyes, I saw hope because as he looked at me, he was saying those three words all chronic illness survivors long to hear: I believe you. And not only did he believe me, but he was promising to help me. He was promising that he’d look for answers, and he wouldn’t give up on me like so many others had before.

I think that’s why it hurt so much more when, eight months later, he did.

It’s amazing how much rejection feels the same, whether it’s a boyfriend or a job interview or yes, a physician. In the days to come afterward, I would compare it to that time I met my boyfriend at the local Starbucks expecting a normal coffee date, and was instead unexpectedly and unceremoniously dumped. Even though that particular experience had happened over 10 years ago, I immediately recognized the feeling of rejection again – the feeling of my heart falling into my stomach, of having my strength knocked out of me, of my very sense of self being shattered. A familiar feeling, and an unwelcome one.

I wish I could say that I kept my composure, that I accepted his words and held my head high as I left his office, that I never let him see how he had broken me. Instead, much like the Starbucks incident from 10 years ago, I cried. And when I say I cried, I don’t mean that I wiped a few tears from my face with a tissue that I happened to conveniently carry in my bag. I mean that I sobbed – whole body, gut-wrenching sobs, and I most certainly did not have a tissue. I couldn’t have stopped those tears if I wanted to. It was like trying to hold the ocean back with a broom.

I hoped my tears would somehow tell him what I could not manage to say – that I had nowhere else to turn. Perhaps more importantly, I hoped he would understand that I will never have the luxury of giving up and moving on. I cannot simply write this body off and go to the next, as he can with his patients. For better and for worse, this is the body I am with. This is the body I must take with me to the elevator, to the disabled space in the parking lot, to my home.

Of course there was no way that the doctor could have known just how much an impact his rejection would have on me. He couldn’t have known that behind my waterfall of tears were 15 years worth of rejections, starting when I was just 14 years old and a doctor quietly pulled my mother aside and said he believed I was simply acting out. He could not have known the literal months I spent wondering if it was entirely in my head, if I was making it up and just didn’t have the insight to know it. He did not know how the doctor that finally diagnosed me with EDS had saved my life, despite diagnosing me with a not life-threatening disease, because I had been so close to ending things. He did not know that he alone had given me hope again, and subsequently snatched it all away.

In the midst of those thoughts, I found myself wondering if I had been unfair. Had I put too much of my hope in a physician who was, underneath all the education and books, also just a man? Had I expected too much of him? There is something to be said, after all, for the physician who can admit when he doesn’t have the answers. Was it unrealistic of me to ask that he continue to look for those answers when he had admittedly reached the end of his expertise? Was I holding him responsible for my 15 years of bad patient experience? Had he actually done everything he could think of to do, and was I unfairly expecting him to become an EDS specialist overnight? Was he also disappointed that he couldn’t help me more?

When confronted with the pain of rejection, it is easy to paint a picture of our doctors as evil scientists that are purposefully withholding our cure. However, as I began to see my doctor for what he actually is – a human, not a savior – it became evident that he had done the best he could with the knowledge he had.

And while I was sitting at rock bottom, which is located somewhere underneath the layers of blankets on my bed, I came to realize that it wasn’t really the diagnosis that I cared so much about. When the doctor had offered to help me, I did not imagine him merely sticking a label on what I was feeling and walking away, a job well done. I imagined him helping me get my pre-accident life back, which I had already been working toward with physical therapy and medications. I knew that having a name for my symptoms would not have changed my treatment plan, no matter how convinced I was that I needed it to get better. So, just as my physician had given up on me, I I gave up on my attachment to the name of this mystery injury. When I finally crawled out from rock bottom and went to another doctor, I was no longer seeking a label. I was seeking treatment.

The rejection still hurts.

However, there is freedom in acceptance of the fact that I may never find an answer for the symptoms that have plagued me since the accident. I know I will continue to encounter healthcare professionals who do not believe me, or throw up their hands in defeat. I refuse to allow either of these things to stop me from living my best life. Rather than focusing what energy I do have on continuing to hunt an elusive diagnosis, I have made the decision to instead focus on how to live with the body I have – relearning how to walk with neuropathy, not holding glasses in my weaker hand, etc. Because at the end of the day, this is the body I must take with me to the elevator, to the car in the disabled parking spot, to my home where my husband waits for me, to the park where my dogs play. For better and for worse.

Getty Image by kieferpix

Originally published: March 19, 2018
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