“How convenient for you, Sarah. Your illness allows you to pick and choose when and where you want to show up, one friend sarcastically remarked.” Another friend asked, “do you know when Sarah will get better?” Still another answered, “when her insurance runs out!” These kinds of comments have been deeply upsetting to me over the years. I can recall, on some occasions, my stomach feeling queasy and being left speechless. I wish I could tell you that such hurtful words do not affect me. But, they do. They make me feel ashamed, embarrassed, and vulnerable. Until I remind myself who I really am and regain my composure.
Every minute I am awake, I am running out of energy. Is it any wonder that I recently resorted to receiving a stool transplant from a healthy person in an effort to save myself?!?!?!
When I am out and about, I show no signs of the physically devastating disease that strikes women, disproportionately, with a vengeance – myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a complex disease characterized by overwhelming fatigue and a substantial loss of physical and cognitive function, with multifactorial causes and no effective treatments.
When I collapse into bed, the fatigue actually hurts. For 25 years, I’ve lived
with ME/CFS. It has completely upended my life — robbing me of a majority of my precious time on earth. But, if you met me in person, you’d never know I have it. Because, on a good day when I’m feeling good and have enough energy for about two hours of normal activity, I’m told, “you look too good to be sick,” and, on a bad day when I’m not feeling good, I’ve crashed in my bed and you won’t see me.
It’s not that healthy people don’t understand crushing fatigue; it’s that they have never felt depleted on such a deep cellular level, for years – actually decades — on end. Most of the time, looking healthy is an asset. But for me, and 10% of all Americans living with an invisible illness (according to Disabled World’s “Invisible Disabilities: List & Information”), it’s a liability because it undermines our attempts to convey honestly to family, friends and coworkers what we’re going through on a daily basis.
It’s a cruel irony. When people look at me they see a well person. Even some family members who know me best have trouble believing that I am chronically ill. I see the doubt in their eyes and hear it in the comments that have become so familiar to me. “You look too good to be sick,” they say. Yes, and I am not alone. In the United States, 96% of people with chronic medical conditions show no outward signs of their illness. People with an invisible illness and people who care about them should read a post entitled “Why People With Invisible Illnesses Don’t Like Hearing That We Look Good” at themighty.com.
IN THE BEGINNING
Growing up, I was healthy. As a young woman in my early thirties, living and working as a psychotherapist in New York City, I woke up most days feeling well. At 32, I married Mitchell S. Rosenthal, MD, who founded Phoenix House, the nation’s largest not-for-profit drug-and-alcohol rehabilitation organization. For ten years, we enjoyed an active, adventurous life together. Then, I got sick.
My sickness didn’t happen overnight. It began, as this disease often does, with a bad viral illness that lingered. I suffered with muscle and joint pains, frequent sore throat and headaches, difficulty concentrating, and tender and swollen lymph nodes in my neck and armpits. That was in 1991 and the pattern continued. One day, in 1996, when I was forty, it dawned on me that there was no getting better. I was chronically sick.
When I finally realized that my profound weakness, paralyzing fatigue, inability to tolerate exercise, and persistent migraines were continuing without let-up and not going away, I did what anyone would do – I went to the doctor. He told me, flatly, “there’s nothing wrong with you. It’s all in your head.” Despite the fact that research had already proven the existence of ME/CFS, I found no doctor of the approximately 12 whom I consulted who was willing to confirm my disease after being advised of my symptoms. Instead, it took me many more years until I identified my illness on the internet!
For as long as I’ve had CFS, I’ve been on a difficult, often tormenting journey – a quest to understand, diagnose, live, cope, and, even thrive with a disease that is mostly invisible and only recently “proven” to exist. I consulted one physician after another — infectious-disease specialists, neurologists, cardiologists, endocrinologists, and pain managers. Then my search for relief expanded to include alternative medicine practitioners, nutritionists, herbal medicine doctors, acupuncturists, and more.
Most doctors were unapologetically dismissive of my symptoms. Unfortunately, my story is not unusual. ME/CFS sufferers should follow Benjamin H. Natelson, MD’s simple advice in Your Symptoms Are Real: What to Do When Your Doctor Says Nothing Is Wrong: If your doctor is not sympathetic, then get a new doctor.
MISDIAGNOSIS & HEALTHCARE GENDER BIAS
Taking the Hippocratic Oath is an important step in becoming a medical doctor. And, within that Oath is: “first, do no harm.” Yet, as reported by CBS News, according to a 2013 “Diagnostic Error in Medicine” study published in BMJ Quality & Safety journal, the fact is that 12 million Americans (1 in 20 adult patients) are misdiagnosed each year and “researchers say in half of those cases, the misdiagnosis has the potential to result in harm.” Some misdiagnoses are due to research bias, since men are more often used in the study of diseases. Other reasons include failure by doctors to order proper diagnostic tests; failure by patients to provide accurate medical histories; and, errors made by doctors in interpreting results. Granted, ME/CFS is a complex disease. But, is that a reasonable excuse? Let’s dig deeper. A recent article in The Guardian headlined, “The healthcare gender bias: do men get better medical treatment?” reports that women are given short shrift and serially misdiagnosed. A recent article in Glamour asked why. Among the answers: Doctors think women are too emotional and women are medical mysteries. Do these answers reasonably explain why “millions of women suffer from (ME/CFS) a disease that virtually sucks the life out of them – but doctors still don’t take it seriously” (Cosmopolitan, October 3, 2017)?
In fact, several descriptions of illnesses resembling ME/CFS have been reported for at least two hundred years. And, these illnesses, mostly affecting women, have been systematically mislabeled, denied, and dismissed.
Following an investigation of 160 cases of a mysterious chronic flu-like illness reported by doctors in Incline Village, Lake Tahoe, Nevada in 1984, the then CDC Chief, Dr. William Reeves, reported no viral cause, no immune system abnormalities, and no clusters. And, when asked about the illness, Reeves answered: “that was hysteria.” Not surprising, as The Guardian’s healthcare gender bias article provides an historical perspective. Aristotle distinguished between the superior male and inferior female form. In medieval times, women were referred to as leaky vessels. And, now there’s the modern-day stereotype: “men are silent stoics; women hysterical hypochondriacs.” Is it any wonder that ME/CFS has been repeatedly dismissed by the medical community, even in the face of scientific evidence?
It took the Centers for Disease Control and Prevention (CDC) until the late 1990’s before officially recognizing the ME/CFS, decades after the invention of the CT scan made it possible to see big white spots of demyelination in the brains of ME/CFS patients. Yet, many physicians remained skeptical of its existence — and, still are. Could the fact that 80% of ME/CFS sufferers are women have anything to do with doctors’ persisting skepticism?
In 2015, the Institute of Medicine (IOM) published a comprehensive
Report and Report Guide for Clinicians, Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness (available at iom.edu/MECFS), in which Columbia University researchers showed the first robust physical evidence
that ME/CFS is a biological illness. According to the IOM report, ME/CFS afflicts up to 2.5 million Americans, with 84-91 percent of patients remaining undiagnosed. While this debilitating disorder creates an annual economic burden of $17-$24 billion due to loss of productivity and medical costs, the National Institutes of Health (NIH) promised and fell far short of spending $15 million in 2017 on ME/CFS research, making it one of the most underfunded diseases. According to meaction.net, ME/CFS funding is far below NIH funding levels for other diseases with similar disease burden; and, funding commensurate with its disease burden would be $188 million per year. According to a world-renowned geneticist, considered one of the fathers of the modern era of human genetics, Stanford University’s Ronald W. Davis, Ph.D., Director of Open Medicine Foundation’s ME/CFS Scientific Board, that’s because “they still don’t believe it’s real!”
HEALTH MANAGEMENT
Over the years I have crisscrossed the United States and beyond in search of an effective treatment, mainstream or experimental. Some ME/CFS patients have reported partial relief from diet (i.e., healthprep.com reports six foods known to dramatically improve CFS: chickpeas; salmon; quinoa; kale; blueberries; and, flaxseed oil). Still others have reported temporary relief of symptoms from pharmaceutical drugs, antiviral and immunological therapies. And, others have found megavitamins helpful. Light exercises, stretching and movement therapies, and pacing (an energy management strategy) may alleviate some symptoms, but must be considered with great caution, because it is easy for ME/CFS patients to exceed their limits.
I’ve tried everything from hormone treatments to vitamin infusions to hyperbaric oxygen chambers. All to no avail. But, most recently, I tried a fecal microbiota transplant (FMT) that involves transplanting of fecal bacteria from a healthy individual into a recipient. It seems to have given me more energy and I remain cautiously optimistic.
APPEARANCE-ILLNESS DISCONNECT
I know the disconnect between my appearance and my illness can be confusing for my friends. And faced with something they don’t understand, they may create a story to make sense of it. Some of my friends make up their own explanations. Some believe I’m suffering from a mental illness. Others suggest that I bolster my health by strengthening my inner resolve: “Don’t give in to it!” The notion of being able
to pull yourself up by your bootstraps and push through being sick is an American ideal. Among the myriad misconceptions about my illness, I find this one the most tormenting. So often, I simply cannot summon the strength to push through – and it makes me feel like a failure and causes me a great deal of shame, embarrassment, and guilt. But, I am reminded by Dr. Brené Brown, author of Daring Greatly, that “courage is borne out of vulnerability not strength.”
As a psychotherapist, I realize that my reactions to my friends’ comments say more about me than about them. They can’t force me to feel a certain way; only I can do that . Still, I’m sometimes thrown by the simplest communications. Even “How are you?” is difficult to answer.
COPING MECHANISMS
How do I cope? I will sometimes literally shift my thoughts away from my predicament. I can’t spend time looking back at the past; it’s just too depressing. And I can’t look too far forward, either. I try not to project years down the road. Instead, I stay in the moment as much as possible. I’ve worked hard to live with what former TIME magazine managing editor Henry Grunwald called “acceptance without resignation,” in his memoir about going blind, Twilight: Losing Sight, Gaining Insight.
Luckily, when I’m feeling despondent, I can draw upon my psychotherapeutic skills – especially cognitive behavioral therapy strategies. I can offer some psychological survival techniques based upon my professional knowledge and experience as a patient: 1) practice positive thinking – you can train your mind to see the glass as half full rather than half empty; 2) reframe your thinking – you can teach your brain to overcome negative thinking patterns and replace them with positive, healthier thoughts; 3) remind yourself of reasons you have to feel gratitude (see Gratitude by Oliver Sacks and Gratitude: A Way of Life by Louise L. Hay); 4) use visualization – your mind is capable of taking you to far off places that can create a spark in your heart and soul (see Creative Visualization by Shakti Gawain); 5) write in a journal; 6) schedule positive activities on a daily basis – laugh, sing, listen, draw, watch, connect; 7) be mindful (see Practicing The Power of NOW by Eckhart Tolle and Full Catastrophe Living by Jon Kabat-Zinn); and, 8) surround yourself with people who care and try to understand you. Patients seeking support groups may consider: dailystrength.org/c/ChronicFatigue-Syndrome/support-group; chronicallyawesome.org; and invisibledisabilities.org. Patients seeking clinical trials may visit painandfatigue.com and centerwatch.com, which categorizes trials by geography as well as by illness.
KEEPING HOPE ALIVE
As a therapist and ME/CFS patient, I have always been amazed by the strength and courage of the human spirit. Viktor E. Frankl illustrates this in the book Man’s Search for Meaning, as he examines the “intensification of inner life” that helped prisoners stay alive by becoming transfixed on the transcendental power of love. Recently, Rabbi Steve Leder also spoke about how suffering can provide a window of transformation in his new best-seller More Beautiful Than Before: How Suffering Transforms Us. Leder wrote that “Pain cracks us open. It breaks us. But in the breaking, there is a new kind of wholeness that emerges.” It’s true. Since I developed ME/CFS, I have learned a lot about appreciation, insight, compassion, belief in self, and gratitude. But I have lost a lot, too. I have lost health. I have lost time. I have lost any sense of certainty about the future.
I could not help but cry my eyes out, nonstop, from beginning to end, as I watched Jennifer Brea’s bold, award-winning 2017 documentary, Unrest, as Jen courageously shared her own experiences and those of other ME/CFS patients from around the world, offered a historical perspective on the failure of the healthcare system to respond even in the face of scientific discovery, and created further awareness of the #MillionsMissing worldwide movement that advocates for increased government funding for ME/CFS research, clinical trials, medical education, and public awareness. This advocacy group, organized by #MEAction, a patient/caregiver group, estimates that about 20 million people worldwide are missing from their lives because of ME/CFS.
Pain has a way of erasing all sense of aliveness, of agency. Excruciating pain can make you feel like you might roll over into death. This soul-deep pain, relentless, recurring, and profound, can take you into a very dark place. Tragically, we have lost many ME/CFS sufferers to death by suicide, which is a major risk factor for the condition, according to a retrospective cohort study recently reported in The Lancet. But I can’t let myself fall into or remain in despair.
Despite my illness, I have strong connections to a happier, healthier world through my husband and close friends. Indeed, two of my very closest friends actually see me as courageous, optimistic, and spirited. I am one of the lucky ones. Many ME/CFS sufferers have lost their spouses and their friends. I have kept both. Needless to say, when ME/CFS strikes, large adjustments must be made if relationships are to survive. I think, in part, it’s my husband’s independent nature, dedication to his career, and outside interests that have enabled him to stay. We are both relatively self-sufficient and I think that helps, too. And, of course, he loves me; but, sometimes, love is not enough. We are fortunate to have an apartment in New York City and a home in the country. But all good fortune notwithstanding, ME/CFS is my reality.
I thank God that I’m able to work. Although my career life has been severely limited (I had to stop working as an adolescent family therapist at Phoenix House, where I had conducted individual and group sessions), I still give psychotherapy and counseling to a handful of my patients and recognize that having the opportunity to help them is a gift. I even managed to write a book that helps women cope with their unavailable fathers.
I still believe that as long as there is life, there is hope. But during those moments when I feel that hope is gone, then what? Then, I remind myself that I am more than my illness. I am Sarah–I care about my husband, family and friends, about my patients, about saving elephants, world events, literature, and so much else. I have not given up on life, or on trying to live it.
As Jennifer Worth expressed in Shadows of the Workhouse, “health is the greatest of God’s gifts, but we take it for granted; yet it hangs on a thread as fine as a spider’s web and the smallest thing can make it snap, leaving the strongest of us helpless in an instant. And in that instant, hope is our protector and love our panacea.”
ABOUT THE AUTHOR
Sarah Simms has been a ME/CFS patient and psychotherapist for over a quarter century. Sarah received a PhD from New York University. She is the author of The Unavailable Father: Seven Ways Women Can Understand, Heal and Cope with a Broken Father-Daughter Relationship. Sarah resides with her husband Mitchell Rosenthal, MD in New York City and East Hampton.