This spring, I graduated Summa Cum Laude with highest honors and Phi Beta Kappa with a Bachelor of Science in Biology and Neuroscience and a Master of Science in Biology -- all of which I completed in four years.
This is a moment of triumph and relief, but also of grief at the physical and mental trauma that I have experienced in the last two years at the hands of a crippling disease. I feel like I have just finished a marathon with a broken leg. I have had Chronic Fatigue Syndrome (C.F.S.), known outside of the U.S. as Myalgic Encephalomyelitis (M.E.), for the last two years. Only those close to me have been aware of this, but I have struggled to adequately communicate my experience even to them.
Hardship is capable of great destruction, but it can also galvanize determination and expose ties of support made visible only under its revealing light. To the friends and family who have supported me, the people who have let me laugh, cry, vent and sleep in socially unacceptable places, thank you from the bottom of my heart. Your support has meant more than you realize, and I never would have made it to graduation without you.
“Hardship is capable of great destruction, but it can also galvanize determination and expose ties of support made visible only under its revealing light.”
The gravity of this moment in time feels hidden. I don’t want to hide anymore. By hiding I do a disservice to myself and others with invisible illnesses. Like so many with this disease, I cringe at the name ‘Chronic Fatigue Syndrome,' with its strong association by the public and many physicians as a ‘yuppy disease’ of the lazy and hysterical.
This damaging misconception is despite over 4,000 peer reviewed journal articles demonstrating severe biochemical pathology in C.F.S./M.E. patients, classification by the FDA as a “serious or life-threatening disease" and the conclusion of an investigation by the Institute of Medicine committee that C.F.S./M.E. is indeed a severely debilitating biological illness.
I have personally encountered several physicians who have given me unhelpful, irrelevant, and potentially physically damaging medical advice (were I not an informed patient).
There were so many times that I considered taking a medical leave of absence, risking never being able to return to my education if my health did not improve. I went from loving backpacking and sailing to struggling to make it to a 50-minute lecture; from being able to recall nearly any dialogue I had heard to having the short-term memory of a goldfish. Simple tasks like grocery shopping or cooking dinner can lay me flat for over a week.
“Every day I get out of bed, I am fighting with every fiber of my being.”
Every day I get out of bed, I am fighting with every fiber of my being. I can’t remember what it feels like to not be exhausted, foggy and in pain. I struggle to identify with a self I do not recognize. If you see me out and about, you can be sure that I am pushing myself and will be paying for it later. I am a prisoner to the whims of my health, always resisting arrest but inevitably crashing into a bed-ridden flu-like state. I shift clumsily between the able-bodied and disabled community, feeling like an imposter in both.
So many people are forced to wage their invisible wars alone, the battle scars of which the rest of the world may never realize. To be seen and understood is a basic human need. I have found that trying to conceal these invisible battles only serves to further isolate and distance oneself from the social support and understanding that is so desperately needed during hard times. I am done being silenced and dismissed by such a large faction of the medical community.
I have no way of knowing what the future holds, but my journey with this disease is far from over. It can last decades if not indefinitely. There is no known treatment. Patients are left to fend for themselves in a world that dismisses their experience.
C.F.S./M.E. is not of debate in the scientific community, and it shouldn’t be of debate in the medical community. There is a woeful paucity of research regarding the biological cause. This is not surprising when the total annual governmental funding for C.F.S./M.E. in the U.S. is roughly $6 million.
Community-based studies indicate that C.F.S./M.E. affects around 0.4-3 percent, placing it on par in prevalence with MS, Parkinson’s, and HIV/AIDS. A prominent CFS and HIV/AIDS physician (Prof. Mark Loveless, head of the AIDS and M.E./C.F.S. Clinic at Oregon Health Sciences University) has likened the everyday condition of a C.F.S./M.E. patient to that of an AIDS patient two months before death, the primary difference being that C.F.S./M.E. drags on for decades.
It seems every bodily system examined has some critical flaw, and with so many intertwining leads it is difficult to differentiate between cause and effect. C.F.S./M.E. patients can show a decrease in white matter in the brain, increased ventricular size, reduced grey matter volume, mitochondrial dysfunction, altered immune marker levels in the cerebrospinal fluid, EEG abnormalities, neuroimmune hyperactivity, sympathetic nervous system dysfunction, increased levels of activated T cells, increased susceptibility to infections, decreased aerobic capacity, and the list goes on. This field is in dire need of more scientific research and funding.
“My unknowns are if I will ever be able to live independently, if I will be able to pursue the life and career goals that are important to me, or be trapped in a non-compliant body for the rest of my life.”
I want to be able to salsa dance the night away, sail around the world, and become a physician scientist who improves the lives of patients and adds to our understanding of human biology. Because of this illness, these dreams are indefinitely postponed. As we graduate, we all face hard decisions and unknowns. My unknowns are if I will ever be able to live independently, if I will be able to pursue the life and career goals that are important to me, or be trapped in a non-compliant body for the rest of my life. I don’t want you to pity me, I want you to see us, to see the millions of people with C.F.S./M.E. who’s lives have been stolen from them by this poorly understood disease. Twenty-five percent of C.F.S./M.E. patients are housebound, few are able to work full time, and less than 20 percent are able to work part-time (1).
It is time to upend the damaging misconceptions of C.F.S./M.E. and for a dramatic increase in research funding. Based on current governmental research funding, the loss of a year of my life and my contribution to the annual GDP is worth only $6 to my government. The CDC estimates the economic burden of C.F.S./M.E. in the U.S. to be $19-51 billion per year. Our society’s failure to address this illness is a social tragedy, but also an economic blunder. Instead of starting medical school next fall, this illness has necessitated my returning to live with my parents to focus on resting, researching my condition, and trying everything under the sun to get better.
During this time of convalescence, I hope to become an advocate for other patients through social support and scientific involvement. I will write to communicate and to compile scientific ideas regarding this illness, but also to maintain my sanity. I will write to remind myself I still have a voice and agency, although they manifest differently now than in the past. I am here. This is M.E.
Reference:
1. Pendergrast, T., Brown, A., Sunnquist, M., Jantke, R., Newton, J.L.,
Strand, E.B., and Jason, L.A. (2016). Housebound versus nonhousebound
patients with myalgic encephalomyelitis and chronic fatigue syndrome.
Chronic Illn.