After 11 years of marinating in chronic illness, my ability to work has all but evaporated and I have entered the world of full time disability for the first time in my life. This time of year would normally mark a return to university life after the summer break. Right now, my professor colleagues are putting the final touches on their course syllabi or perhaps are working madly to finish a manuscript before the semester starts, when their attention will scatter as they return to their four jobs in one: educator, mentor, researcher, and administrator. For now, I have a sole focus: to try to improve my health.
As someone who has worked hard since the age of 11, I can’t imagine more than a few weeks going by without engaging in some sort of industry. So far my full time disability has only lasted three months, so the memory of working life is still fresh. But over time, my CV will gather dust, and many years will have passed. I was saddened recently when I read a story about another person with my illness – myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS.
In her piece, she reflected on the six years that had passed since leaving her job as a faculty member and her efforts to find meaning in her new life as a sick and disabled person. The uncertainty that chronic illness brings to one’s career prospects, along with all else in life, is bracing.
I ask myself daily, “What on earth am I going to do with myself now that I am disabled and not working?” But harder still, if I am honest with myself, is the knowledge that my career as an academic is over, and has been over for the past five years, . At first, I could manage my job by spending all of my non-working hours in bed. Then I had to drop my research program, which is so critical for a scientist. Next, I had to minimize my teaching schedule. Eventually, I could not even do administrative work to my satisfaction. One cannot simply drop out of academia for a number of years and hope to return. It does not work that way. It is all or nothing.
Sowing the seeds of chronic illness
When I was 20, I decided that I wanted to be a conservation scientist and save Central American rainforests. I dreamed of a career that brought together my love of science with my passion for protecting biological diversity. I started my journey traveling solo through war-torn Guatemala, Honduras and Nicaragua, and ended it in Costa Rica, where I quickly decided that the tropics were not for me, at least not for field work (I hate being hot!). Pursuing a Ph.D. in population biology at the University of California – Davis seemed the perfect opportunity to combine two of my favorite things – ecology and travel to exotic places.
My Ph.D. program was one of the more prestigious, rigorous and probably sadistic ones in the country, but perhaps everyone feels this way about their graduate school experience. The extreme stress of graduate school, combined with a deep insecurity about my abilities, led me to make some unwise choices about my health. I survived on roughly five hours of sleep a night and fueled myself with nothing but carbohydrates and caffeine, all in the name of trying to prove myself (to myself mostly). This would go on for weeks until I would crash and start all over. Little did I know that I was sowing the seeds of chronic illness.
My dissertation research took me to South Africa, a place that provided sanctuary from the stress and trauma of graduate school and a place to grieve my mother’s sudden death from a brain aneurysm during my junior year of college. I would spend the first month of my 9-month field stints in a remote and rustic cabin nestled in the Kogelberg Biosphere Preserve, the crown jewel of the fynbos biome, and one of the world’s biologically diverse hotspots.
My field season started at the onset of the cool and rainy season, allowing me to leave behind the searing summer heat of California’s Central Valley. As the winter fronts blew in off the Atlantic, I could feel my nervous system settle down from the high stress of being a Ph.D. student. Slowly, the solitude of the cabin allowed me to relax back into my own skin. Eventually, dear friends from the University of Cape Town came calling, bringing me red wine and olives from the South African town of Stellenbosch. Their company restored my ability and desire to connect with fellow humans again.
Many people with ME/CFS can pinpoint the precise moment they fell ill. On the evening before returning to the US, I struggled to pack up and clean my cabin. My limbs were heavy, my brain was thick, and I was fatigued in a way I had never before experienced, even with the flu, yet nothing else seemed to be wrong. During the flight home, I was delirious and thankfully had a row of four seats to myself.
After spending a few days in bed nursing my jet lag and trying to recover from whatever bug this was, I mounted my bike and attempted to ride to my office at UC Davis. A third of the way there, I realized that I was in trouble. I was too far from the university and too far from my house. Somehow, I pedaled home and eventually drove to the student health clinic to be evaluated.
Within moments I had an answer: at the ripe age of 32, I had mononucleosis. Before leaving the exam room, the doctor told me that, “Sometimes people don’t recover from mono, especially if the onset is later in life. And you may be more likely to develop lymphoma, so keep an eye on that.” Who ever heard of mono not going away and causing cancer? I found that to be rather alarming but promptly put it out of my mind.
My recovery was difficult and slow, but after six months I was back in South Africa and able to work 12-hour days in the field. Occasionally, I would wake up with familiar feelings of crippling fatigue, a mild sore throat and swollen glands. I called these my “monoecious” days and stayed home. This happened 2-3 days a month, but otherwise I was managing.
Friends and colleagues who spent their holidays nearby looked after me well and invited me to dinner after my field days. After my convalescence from mono back in California, one of my South African friends told me that she once had ME, too. ME? What the heck is that? I had never heard of it. She said she had developed it after a bout of glandular fever, which I would eventually learn was the name used for mononucleosis in South Africa, as well as in most other English-speaking countries. I thought to myself, “I’ve never had glandular fever, nor do I have ME, whatever that is!” Despite this, we often discussed her experience with the illness, how she was bedbound for the first four years of her son’s life. She shared what worked for her in managing her illness – magnesium, primrose oil, etc.
I remember going to the pharmacy to purchase supplements and kneeling down on the floor in the aisle, pretending to get a closer look, feeling so drained. There I was, thinking this would be behind me once I took the supplements that help ME, even though I didn’t have ME. Little did I know that she was foreshadowing the road ahead.
An illness takes hold
Six years later, and just after starting my faculty position, I sat on an examination table, legs dangling down, resisting the urge to lie back and rest. The long wait gave me time to reflect on my situation. Why was I feeling so sick? Was it because I was still breast-feeding and co-sleeping with my son? Why did I feel like I had mono all over again? After giving birth in 2005, I quickly realized that being a senior scientist for The Nature Conservancy was no longer going to work for me. I was traveling 3-4 nights a week and managed to lug around my infant son for the first seven months after he was born.
When a position was offered to me at Sonoma State University, where my husband was a professor, I felt incredibly fortunate (or so I thought). But I had never taught beyond serving as a TA in graduate school, and I had three new courses to develop on the fly. This meant having to work late into the night writing lectures and grading, only to co-sleep with our son who was still waking every hour to nurse. By November of my first semester, I hit the wall and was as sick as I was when I had mono.
My physician at the time was concerned and suggested that I had chronic Epstein-Barr Virus (EBV). She said I could try an off-label use of acyclovir, a drug commonly used to manage herpes simplex infections, but studies in the 1980s had shown that it was not effective for use on other herpes viruses like EBV and there was even doubt that EBV could be a chronic infection in the first place. I tried acyclovir for a month but it did not help, and I figured it was a stretch, especially with little evidence to back the approach. It was the first time I felt that my being a scientist placed me at a disadvantage in dealing with this illness. We tend to place far too much faith in institutions and are prone to believing that evidence-based medicine is the answer (it might be if your particular disease is well researched, but mine most certainly is not).
A new doctor (my insurance had changed) tested only my thyroid and vitamin D levels and conferred the “ignoble diagnosis of chronic fatigue syndrome.” He added that there was nothing I could do about it except to wait for another 10-20 years for science to inform us. I foolishly believed him for five years.
I kept returning to him for seemingly unrelated issues – foot pain (are my arches collapsing?), stomach pain and queasiness, a “sore” liver, costochondritis, insomnia, and of course the fatigue. After reaching the end of extensive gastroenterological investigations with nothing turning up, the lightbulb went on. This was a systemic disease and all of my symptoms were somehow linked. I soon found a private practice in my town specializing in complex chronic illnesses.
Starting in 2011, I began a journey down the rabbit hole that is Lyme disease. I had to park my scientist credentials outside the door as I embarked on treatments that most would raise an eyebrow at, including years of IV antibiotics and many naturopathic remedies. I never had a positive Lyme test. Despite these interventions, the overall trajectory was downward (but with enough positive responses along the way to keep going). I was desperate and was being marginalized by health care professionals in the mainstream. With Lyme disease, at least there was a real enemy to fight – even if it was an imagined one.
Eventually, I decided that my problem had to be more viral in nature, rather than bacterially-driven Lyme disease, given how my illness started with mono. I had had seemingly enough antibiotics to treat any bacterial infections. I identified two ME/CFS specialists, thinking that they would be the best doctors to address a chronic viral problem, with the full understanding that the problem was likely much deeper in the immune system. At this stage, there was growing evidence supporting the use of antiviral medications for treating ME/CFS, but some of these drugs were expensive and I knew I would need a specialist to access them affordably. I rolled the dice and was fortunate to get to see one of the leading ME/CFS specialists. It was only then that I learned that I had been missing a vitally important piece of the puzzle, because I had been treating the wrong illness. Although both Lyme disease and ME/CFS share a long list of non-specific symptoms (symptoms that can be ascribed to any number of conditions), there is one feature that sets the two illnesses apart: post-exertional malaise, or PEM, which is a worsening of neuro-immune symptoms caused by exertion.
ME/CFS: a disease of the immune, nervous, and energy systems
ME/CFS is the only disease for which exercise (or any form of exertion) worsens the condition. This runs counter to most medical and popular advice on how to stay healthy. When ME/CFS patients are delayed in getting a proper diagnosis, they run the risk of overdoing it, and in doing so, making their condition far worse.
Much of this happens at the hands of physicians, who insist that exercise is the answer to our fatigue. It is well documented that most exercise harms people with ME/CFS. Sadly, progress in ME/CFS research was largely thwarted for five years by an influential group of British psychiatrists who published a study in the Lancet asserting that exercise and cognitive behavioral therapy were effective treatments for this disease. Subsequent reanalysis of the data revealed serious flaws in the paper, and the U.S. Center for Disease Control and Prevention (CDC) has removed all mention of this study from its website. Too much evidence has mounted for anyone now to refute the fact that ME/CFS is a very serious neuro-immune disease, yet the legacy of this study continues, especially in the United Kingdom.
It is not entirely understood why our symptoms worsen with exertion, but one reason is that the anaerobic threshold is substantially lower in people with ME/CFS, which means that we burn fuel inefficiently much of the time and feel like we have run a marathon from something as seemingly harmless as rolling over in bed. Even using my brain to write this essay will cause PEM. All those years of overdoing it with this illness have taken their toll.
Most doctors do not appreciate the fact that energy metabolism is severely impaired in ME/CFS patients because it is not taught in most medical school curricula. This creates many problems for patients. Because this is a systemic illness, we often find ourselves being referred to specialists who may or may not have experience with this disease. This often puts patients at further risk because pressing health concerns are routinely dismissed. It is a bit of a lottery; occasionally you happen upon a doctor who is curious, listens well, and wants to help, even though they do not know much about this disease.
I was lucky this past spring, when I was referred to the neurology department at Stanford University. Although they might not have much direct experience with ME/CFS, they understand one of the more debilitating components of this illness – disorders of the autonomic nervous system (ANS), also called dysautonomia. Preliminary investigations have shown that my blood pressure does not respond as it should and my adrenaline spikes with little provocation. My heart rate increases about 30-50 beats when I stand up and it is much worse on days when I struggle with adrenaline surges. It takes very little provocation to send my heart rate to 150 beats per minute (bpm) from a resting heart rate of 55 bpm, and it can take a day or two to recover from such spikes. Lately the spikes happen daily, if not multiple times a day, leaving very little time for recovery.
An impaired ANS also makes eating and digesting difficult, and greatly affects sleep patterns, temperature, and sweating. All of this means I cannot handle much stress, have a low body mass index, and now use an electric wheelchair at home to minimize the rapid and sustained rises in my heart rate that I experience when standing. Fortunately, there are some helpful treatments to manage this aspect of my condition.
ME/CFS is a spectrum illness, meaning that some people are only mildly affected while others are severely impacted to the extent that they are bed bound, unable to speak or move, and may require nutrition through feeding tubes. People can remain in this state for years before the disease finally takes them from B-cell cancers, digestive failure, heart failure, or more likely, suicide. I started out as moderate, but am now moderate to severe, with periods of being on the more severe side due to the fact that I was unaware of the dangers of PEM and pushed through my fatigue for years. There are many aspects of this illness that are challenging for me, but the hardest part is that I now live from hour to hour most days, and some days it is more like minute to minute. I never know when the rug is going to be pulled out from underneath me in the form of a minor or major health crisis.
Delays in diagnosis are probably one of the most substantial barriers facing people with ME/CFS, and that was certainly true with me. This happens because we do not yet have a good diagnostic test, apart from a brutal 2-day exercise test that demonstrates significant drops in aerobic function the day following exertion (this happens in no other illness that has been looked at). We lack a good diagnostic test because funding from NIH has been woefully inadequate, probably owing to the damaging views about this illness peddled by psychiatry. Why do most major illnesses have such a dark history of blaming the patients? How can we be living in the 21st century, with the technology we possess at our finger tips, and still not understand a disease that is more than four times as prevalent as multiple sclerosis (MS) and that carries a quality of life on par with late-stage AIDS and congestive heart failure (CHF)? I can attest to this after witnessing my father suffer through CHF – we were eerily well-matched during the last four months of his life, hobbling around together on our walkers.
Now that I am at approximately 20% of my former functionality, I have come to see my disability as a gift, one that will allow me to do the pacing I need to stay in my energy envelop. I use a heart rate monitor like a shock collar to remind me when my heart rate is above a safe threshold for me. This usually translates to being in bed for the entire day, getting up only for essential things like eating and going to the bathroom, and I use my electric wheelchair for these tasks. Showering has become a luxury.
My swan song?
My South African friends asked what I wanted my swan song to be, or my last act before returning home, a final adventure of sorts. I chose the Kalahari during the rainy season and went there with some of the finest people I know. The images from that trip are still seared into my brain. Like watching black-backed jackals come sniffing around while preparing a poike (a stew cooked outdoors in a cast iron pot with legs). I will never forget the backlit skies with thunderhead clouds framing the delicate new growth brought on by the rains. The yellows, greens, and greys of southern Africa during the rainy season can’t be found anywhere else. My illness makes these experiences even sweeter now.
I remain hopeful that being a professor is not my last professional act, but the varied and complex nature of my illness means I am no longer able to work, in any capacity, and likely won’t be able to for the foreseeable future (or until effective treatments are developed). I am still the same me. My brain, when working, is still full of curiosity, and I have a strong desire to serve and connect with people. This is especially hard for me because in a better moment, I can almost imagine tackling a project. I pick up an idea, make progress, then crash. It can be two months before I return to it again, if at all. There is a virtual graveyard where many fun and creative ideas and dreams of mine have gone to die. With my brain fog, ideas float around me in slow and random motion, as on a space ship with no gravity. Occasionally I reach for an idea and occasionally I catch one. I am surprisingly OK with this process. But the truth is that even these ideas may never take flight.
Working adds diverse experiences to life – stimulation, connection, belonging, purpose – and stepping out of the workforce narrows opportunities that greatly enrich life. We are hard wired to work. How do you convey to someone the sadness that comes from having to put down a dream career for which you worked so hard? To go from being a respected and valued community member, to having no community? We recently had to leave our home in the California oaks because I can no longer work. I do not know anyone in our new town and do not have the usual ways of growing a community here because I am too sick and it is too late to meet other parents at my son’s school or to make friends at work. Recently, I sat alone at the school yard, watching my son run a race, tears streaming behind my large, dark sunglasses. I felt so alone being a spectator to all of the parents standing around, talking, sharing, doing what parents do all the time at schools all around the world.
One of the things I am finding most challenging now that I am no longer working is my plummeting sense of self-worth. So much of our identity is wrapped up in work, especially when coming from an all-consuming career like academia. I loved what I did. I was happy working all the time, including evenings, weekends, and even holidays. This was my natural tendency and it was driven, in large part, by my passion for what I did. But now that I am not working, I feel rudderless and am uncertain how to move past the fact that I am not contributing in the way I once did on all fronts, including family.
My major professor from UC Davis once told me, “You have to really want to know the answer to your research question, because your burning desire may be all that sees you through along your path to discovery.” This advice is serving me again. When going through something difficult in life like having a poorly-funded and debilitating chronic illness, you have to really want what’s on the other side to make it through. My desire to understand this illness and get better takes me to some difficult places. The reward of knowledge, and hopefully better treatments ahead, will help allow me to make it through this transition from the well-bodied to the disabled.
When I was a professor, I taught a professional development course to my undergraduates in which I emphasized the idea of transferable skills. I always told them, “People change, plans change, but your skills travel with you.” Well, my plans were changed for me and I am now having to draw on some of my own experience to discover what my transferable skills are and how I might be able to apply them in the fight to bring awareness about ME/CFS, and with that, hopefully vastly increased research funding from NIH, private funders, and other sources.
I love to help and support people. I love science. I love writing. Somehow, I will combine these skills and find my new life’s calling. I trust that next big idea will come to me, but that is not what this phase of my life is about. I can no longer pretend that I can contribute to society in a consistent and meaningful way while I am this ill. Now is the time to make room for my sick self. I will pick up the pieces when the time is right, and when I do, I can well imagine that I will be a different person. I welcome that day.
I don’t want to define myself by my condition, and luckily have ways of ensuring that this does not happen to me completely. Having a young son is a great way to remain tethered to the healthy world. Yet I, along with 20 million other souls on this planet with this disease, am fighting for my life. Not only are we fighting for more research funding, but we are fighting back the stigma that has prevented breakthroughs on this disease in the first place. For evidence-based medicine to truly work, we need evidence. Evidence requires research dollars. To get research dollars we need increased awareness. I think an effective way to raise awareness is to help people understand that this horrific disease can happen to anyone. So, for now, I am making a deep dive into the world of all things ME/CFS – research, support, and activism.
My dream one day is to walk into a doctor’s office or the emergency room and have them understand right away what kind of care is needed, as occurs with other major illnesses affecting millions of people worldwide. In the meantime, I will apply what energy I have to recovering and helping make this dream become a reality.
- Have a story you’d like to tell? Health Rising is looking for stories like Caroline’s on how to cope with the issues (lost careers, relationship issues, financial issues) that often come with having a chronic illness. If you’d like to share your story please contact Health Rising via its contact form.
- Health Rising’s “Lives Interrupted” project will soon give people with ME/CFS an opportunity to demonstrate the costs to career and finances this disease so often imposes.