Making Sense of Misdiagnosis

After months that had faded along with my energy into years, after I’d gone to my family doctor complaining about my debilitating ear pain, unusual sensations in my mouth and other odd symptoms, I was worn out more than anything else. My last bit of fight went into getting my referral to an infectious disease specialist. A random conversation with a friend who mentioned post-herpetic neuralgia following shingles left me thinking that the headaches that rendered me immobile and ear pain that had caused me to double over and scream amidst strangers might be that. I’d gone back to my family doctor, and after 3 visits and much insistence, I’d gotten an appointment at the Vancouver Infectious Diseases Centre.

Although my insistence on getting that referral had royally pissed off my family doctor (whom I never saw again after that), it had been worth it. On my first visit to the Vancouver Infectious Disease Centre, I’d been tentatively diagnosed with Ramsey Hunt Syndrome (RHS). It is a late complication of the varicella-zoster virus (VZV) infection—the herpes virus that causes chicken pox and shingles. Once a person is infected with any of the viruses in the herpes family, the virus never leaves the body. It has periods of dormancy and active periods, and during active periods— in the case of Ramsay Hunt Syndrome—it causes inflammation of the seventh cranial nerve (one of the nerves in your head and face), and lots of pain.

I was relieved to have a diagnosis, provisional or not, and my curiosity was peaked when I looked into Ramsey Hunt. Hunt had lived at the turn of the century, and RHS was described as incredibly rare. Something I read suggested that most family doctors would be unlikely to see a single case in their practice over their lifetime. If this was true, I wondered, how was it that Ramsey Hunt had seen enough cases that he had been able to identify this as a syndrome?

I began looking into it and learned that Ramsay Hunt had lived on the eastern seaboard of the US. That was where my family was from, so I knew a bit about the context Hunt worked in around the time he identified the syndrome that bore his name. The eastern US in the early 1900s saw significant immigration. My family, for example, had fled the Pogroms in Eastern Europe and had arrived around the time Ramsay Hunt was identifying RHS. As immigrants settled, cities tended towards neighborhood ethnic insularity, and to a certain degree segregation. I wondered if something about these past immigration patterns had anything to do with the frequency of cases Hunt must have had to see in order to suspect the existence of a syndrome. I filed that thought away for the time being.

Initially, I was just happy to have a tentative diagnosis and be taken seriously. It had been such a long haul figuring out what was wrong with me. Six months after I began seeing the infectious disease specialist, my symptoms were still, at best, poorly controlled, despite frequent increases to the doses of antiviral medications the specialist had prescribed. I’d finally gone on sick leave after a bout of expressive aphasia had left me temporarily unable to speak fluidly or coherently for a short time. Once on sick leave, I had to wait 6 weeks for an MRI of my brain. With all of that going on, I didn’t have the mental or physical energy to be angry at anything or anyone, including the family doctor who had missed my diagnosis (or, more to the point, had gotten it wrong).

In the early days that I was sick, and then on sick leave, I just couldn’t think about it. While I was waiting for an MRI to see if there was evidence that the herpes virus had gone into my brain, I didn’t have the energy to think about anything more than the present. Thinking about the future was terrifying, and thinking about my past attempts to get my family doctor to take my symptoms seriously left me feeling devoid of agency and helpless at a time when I needed to feel hope. I just couldn’t go there, to thinking about how it was that my family doctor had failed to correctly diagnose my illness.

When I finally had the energy and mental space to think about how it was that I’d come to be so sick with one of the most common viruses in the world, I realized the whole story just didn’t make any sense. It turned out that although I had chicken pox as a child, it was another of the herpes viruses – HSV-1, the herpes virus that causes cold sores - that caused my particular grief. How could I have gotten so sick that I ended up on sick leave, the result of a virus that upwards of 90% of the adult population in North America has? How did something so utterly common go unnoticed by my doctor and become much more than a nuisance? I knew part of the story, but the pieces of the puzzle I didn’t yet have tugged at me.

Eventually, after I had been put on sick leave, after I spent months struggling with fatigue—I started thinking about how it was that I had ended up in the situation I was in, and how such a common virus had gone undiagnosed as the source of my ear aches and headaches, particularly during the year that immediately preceded my sick leave, when I’d gone from one herpes outbreak to another, and had complained that the antivirals I’d begun taking daily as a preventative measure didn’t seem to any longer be working. And I began fantasizing about what it was I would say to the family doctor who had misdiagnosed me. I even wrote a few drafts down.

Dear Dr. X,

As I’m sure you are aware (having received consultation letters from my infectious diseases specialist), I have been under treatment for what has been tentatively diagnosed as Ramsey Hunt syndrome, since securing a referral from you eight months ago.

I know you thought I was a mentally ill depressed malingerer—that was clear from our interactions. Well, you may still think I’m mentally ill and/ or depressed. But the reality is that whether or not those things were or are true, I was also suffering from a very real physical illness, which, had it been properly diagnosed and treated, might have been brought under control before I became so ill.

But I never sent them. It wouldn’t have mattered how many times I wrote or rewrote that letter, it wouldn’t have restored my health.

Over time—and I had lots of it, having been on sick leave for three years—my anger began to dissipate. There was, after all, no point to writing the letter, I figured, since the doctor would’ve received letters from the specialist, and had she felt there was anything to say to me about the situation, she would have said it by then. Eventually, as the anger faded, I instead began thinking about what had gone so horribly wrong in my interactions with my doctor.

Wendy, my partner, had chastised me for not acting sicker. “Ellen, if you feel so awful, you should just stay home. If you’re sick, you need to rest,” she’d say with an edge to her voice.

“I can’t just stay home, and not work, because my doctor doesn’t think I’m sick. She won’t give me a sick note. I know I’m sick, but without a note there is an expectation that I should show up at work unless my illness persists more than 3 days,” I’d replied. “And if it goes on for longer than 3 days, I need a note from my doctor.”

“But, Ellen, the fact that you keep working leads your doctor to believe that you aren’t sick,” Wendy would fire back.

We had versions of this conversation many times, particularly early on before I’d made my way to the specialist, had aphasia, and gone on sick leave. The truth was, I could have acted sicker. My job was such that probably nobody would’ve noticed my absence or that I’d been in poor health until it came time to apply for grants. When you apply for grants, part of the application required you to outline all that you’ve done in recent years, and the application form gives you an opportunity to indicate any dates during the previous 5-year period during which you had been ill. That would be the only way anybody might have known that I was sick, since much of my work was carried out independently, and often could be handled by phone. To me, though, not working signaled some form of defeat. I had always been exceptionally good at getting grant money, and I knew that the strength of a proposal had to be supported by evidence of past productivity. If I couldn’t show that I was productive, my chances of getting more money would be seriously diminished. Up until the more or less continuous herpes outbreaks that began in September 2012, I always had been able to keep going in the face of adversity—the person you could count on when somebody had broken a leg in the backcountry, who could walk out for help after a full day’s hike.

Sick as I was, the combination of wanting to stay competitive for grants, the kernel of my identity that was wrapped up with the image of the Energizer Bunny that just kept going, and the messaging I’d received as a child growing up all contributed to the diagnostic failure I experienced. I had watched my father ski with a cast on his arm, and I had grown up in a world where you only went to the doctor when you were really and truly in need—not that this last point had served me particularly well. It seems that I often had difficulty conveying the seriousness of my health issues. My hip had fallen apart when I was 11 (hip dysplasia, the disease big dogs sometimes get, known as a slipped epiphysis in humans), and although I’ve been limping for eight or nine months and my parents did eventually drag me off to the doctor’s, like my herpes, that, too, had initially been improperly diagnosed. When I wanted to go on a camping trip months later and I was still limping, my mother had taken me over to a friend’s house, and the friend—Annie— although a pediatric oncologist, had diagnosed my slipped epiphysis. I limped out of her house that day, went on a camping trip, and came back unable to walk. I went from the camping trip to the doctor’s office to surgery, followed by 3 weeks of traction in the hospital. When I finally made it home, I spent another three weeks bedbound before I was allowed to use crutches to get around. I spent that start of the school year recovering from surgery, and the remainder of the school year back at school on crutches.

A few years later, as a 16-year-old, I cut my thumb on the removable zip tab from a pop can. I didn’t give it much thought until a few days later at a concert. As I was clapping my hands, I noticed that my hand hurt a lot. Over the next few days, I tried to get my parents to take me to the doctor, but for some reason they wouldn’t. My hand got worse, and after some negotiation a few days later, my mother took me to the emergency room. By then my thumb was horribly swollen. They had to cut a piece off the tip of it and put a drain in between where they’d cut the tip off, and an incision they made in the fatty pad at the end of my thumb. Then I had to immobilize and elevate my arm for several days, while taking a very high dose of antibiotics. The pharmacist wondered if the drugs had been prescribed for a horse, because of the high dose. They told me I’d come close to losing my thumb.

My parents definitely had some weird shit going on around medical care, but at least with my hip, they had tried. I came to realize that they had also modelled the “just keep going” behaviours I had come to see in myself. I could remember my mother, after tearing knee ligaments, just carrying on with life (with the exception of driving) while her leg was in an ankle-to-thigh immobilizer. I couldn’t remember her being much constrained by it.

And then there was my household chore during the nine months I spent on crutches with my hip. My parents insisted that I continue clearing the dining room table we ate at every night, while I was on crutches. “How do you expect me to clear a table when I’m on crutches? I can’t carry things with my hands on the crutches?” I’d asked.

“We’ll get you a cart,” my father had responded. And sure enough, a metal cart was produced. Each night I would push it with my crutches, through the swinging door that separated the kitchen and dining room. When I got it close to the table, family members passed their dishes towards me—an activity that was otherwise strictly forbidden at my parent’s dinner table (because I was supposed to go around and individually remove plates). I would then load the soiled dishes onto the cart while balanced on my “good” leg and crutches, and, once loaded, between my crutches and body momentum I pushed the cart back to the kitchen. Then I unloaded the cart into the dishwasher.

Mine was a family where you just kept going. That had its upside. The winter I was on crutches, my parents acquiesced to my wishes for snowshoes for my birthday, and while my family skied every other weekend and on school holidays, I lengthened my crutches (to accommodate the amount I thought they would sink into the snow), strapped on a single snowshoe, and crutched up, and then down, the trails at the ski hill.

Deep down, I knew Wendy was right that I wasn’t acting sick, and that this probably hadn’t been helpful in my interactions with my doctor. It also wasn’t particularly helpful with Wendy. But I didn’t know how to act sick. I had stayed home when I needed to, and by the time I had gotten diagnosed by my specialist, there had been lots of days that illness had felled me. When I got bad headaches and bad earaches I would swallow anti-inflammatories like Chiclets, and lay still in the dark, sometimes for days. The nature of my job was such that if I couldn’t physically show up for the one or two things I needed to for two or three hours a week, unless people called for an appointment and I said I wasn’t able to meet, no one knew I was sick.

The headaches, in particular, had been going on for quite some time. Earlier in my career when I was suffering from headaches, if I ended up missing work or getting behind as a result, I would just work longer days or weekends in an effort to get the work done. By the time I got really and truly sick and ended up on sick leave, I was in my early 50s, and I had stopped working weekends though I still sometimes worked in the evenings. As I got sicker, though, I didn’t have the stamina to do that. And, by then I was committed to work-life balance, and although Wendy would probably argue that to this day I haven’t achieved that, by the time I got sick in my early 50s I was well on my way to a balanced life. What Wendy did notice though (which was a source of tension between us) was that, as I got sicker and had less energy, and I kept trying to work since my doctor didn’t think I was sick, there was less energy for our relationship.

I felt trapped. I knew I was sick, Wendy certainly knew I was sick (though the longer I went undiagnosed, the less certain she too became that I was sick), but my doctor hadn’t given me permission to be sick. I was worn out, and had no idea how to get myself out of the conundrum I was in, other than finding a new family doctor, and that was impossible—I’d been trying.

It was only after I was referred to the Vancouver Infectious Diseases Center and received a tentative diagnosis of Ramsey Hunt Syndrome, then watched my symptoms worsen (in spite of the high levels of antivirals that had been prescribed), that I was finally put on sick leave. My specialist agreed that I’d been trying hard to keep going but wasn’t getting any better, and I suspect that he understood that in a job which depended upon my ability to speak, that not being able to verbally string a sentence together - if only for a relatively short time- was a problem. By the time I was put on sick leave I’d gone through several months of working hard to manage my relationship with my specialist (fearing that he too might assign me to the basket of “mentally ill malingerer”, and I’d have nowhere else to turn). When I was finally put on sick leave—a full year after the perpetual severe herpes outbreaks had begun- I collapsed.

As the sick leave wore on and my anger dissipated under the strain of daily survival, I still found myself wondering how I became so sick with one of the most common viruses in the world. How had my family doctor missed it?

BIO

At the height of her academic career, Ellen became ill with an uncommon response to a common virus (the Herpes Simplex virus which causes cold sores), and ended up on medical leave for three years. Now semi-retired, Ellen is working on a book-length manuscript about her journey of delayed diagnosis and the pursuit of a state of health that allowed her to feel human and pursue her passions. She lives in Vancouver, British Columbia where she enjoys skiing, biking, photography and other artforms, and spending time with family and friends.