Individual Voices, Collective Grief

1 Star2 Stars3 Stars4 Stars5 Stars (92 votes, average: 2.70 out of 5)

The impact of recent events on PWCs and the CFIDS community

Editor’s Note: The following article is reprinted with permission from The CFIDS Chronicle, Vol. 14 No. 4 Fall 2001.

Sept. 11, 2001: Our new day of infamy. The day our biggest personal problems and greatest triumphs lost any importance. The day the 21st century—and a new era—began. The day we witnessed death and clung to life.

The terrorist attacks in New York, Washington D.C. and Pennsylvania propelled the world into a state of shock and grieving. For people with chronic fatigue and immune dysfunction syndrome (CFIDS), it was familiar territory. Yet the everyday haze of emotion and pain grew even thicker as the events unfolded. Feelings of loss and uncertainty that the illness itself brings were intensified by the destruction of property, lives and a way of life. Symptoms that wage daily war on people with CFIDS (PWCs) threatened stronger holds on body and mind.

Most researchers and many people living with the illness agree that CFIDS is stress-sensitive. The effects of life’s ups and downs are felt more intensely by, and require longer recovery times for, PWCs. The long-term impact of Sept. 11 and its aftermath cannot be predicted, either for healthy people or those living with CFIDS. But the unique perspectives of PWCs and advice from CFIDS-savvy healthcare professionals may help as we work to make sense of this uncertain new world.


I spent the morning of Sept. 11 screaming and crying at my television, feeling completely overwhelmed and helpless. It was almost eight hours before I had accounted for my loved ones. My healthy self would have rushed to New York to volunteer in some way. My healthy self could have offered legal services to survivors, or provided grief counseling, or helped with a hundred other tasks. My CFIDS self can sit at home and pray. That’s not good enough, and I am so disappointed in my body, which has let me down once again, and prevented me from being the person I want to be in this world.

–Jennie Spotila, Pennsylvania

Shock. Disbelief. Powerlessness. Anger. Numbness. Fear. Anxiety. According to the National Mental Health Association, all are common responses to disaster. Practicing psychologist, writer and PWC Katrina Berne, PhD, elaborates on why the stress of these events poses such a hazard for PWCs: “All types of stress, whether physical, emotional or cognitive, place tremendous demands on the body to adapt. In the case of a global disaster, we live and relive this national and global devastation, confronted with losses and incomprehensible and reprehensible acts of unspeakable horror. At the same time we experience its effects on our individual lives, where personal loss and life changes challenge our health, increasing body-burden and putting us at risk for almost inevitable relapse.”

Neuroendocrinologist Dr. Dimitris Papanicolaou of Emory University lends a biological explanation for the increased risk of relapse or symptom exacerbation in PWCs: “Based on the current literature, it is safe to presume that the majority of CFS (another term for CFIDS) patients have chronically low hypothalamic-pituitary-adrenal (HPA) axis activity (i.e. low cortisol secretion). Such patients have been shown to demonstrate an exaggerated psychological response to acute psychological stressors, accompanied by a higher plasma epinephrine and norepinephrine response.”

Dr. Ronald Glaser, director of the Behavioral Medicine Research Institute at the Ohio State University, is a world-renowned expert on the well known that acute and chronic stress can cause immune abnormalities that can put a person at risk for infectious diseases, including colds and flu,” he says. “This is very important if a person with CFS is also trying to deal with the stress of new events, like the attacks and bioterrorism. CFS patients should seek out strong, positive social support to help cope with anxiety and uncertainty. Equally important is the buffering effect of social support on stress induced changes in the immune response.”

I live in Miami and it was the stress of Hurricane Andrew that pushed me over the edge of holding my own at work to not being able to function due to the physical, emotional and cognitive aspects of CFS. My symptoms got so much worse that I had no choice but to go on disability. Fortunately, the national tragedy of Sept. 11 did not directly affect my family, but indirectly we have all been touched. I am constantly fighting to have enough energy to survive everyday life. I feel like a walking volcano about to erupt. I have not been able to get a handle on the depression I have felt these last two weeks. And I have been experiencing more body aches and headaches than normal.

–Marisa Sampson, Florida

Medical providers who care for PWCs are reporting an impact on their patients. Like the PWCs studied in south Florida after the devastation wrought by Hurricane Andrew, they are exhibiting increased symptoms and feelings of being completely overwhelmed. Dr. Joseph John, and infectious disease specialist at Robert Wood Johnson Medical Center in New Brunswick, N.J., writes two weeks after the attacks, “I am noticing a major effect of the World Trade Centers tragedy on my patients. We all are SO close here.” Dr. John adds these observations: “Patients with CFS have their own resilience, but upheavals of any kind produce an increase of symptoms. I have noticed in about half my CFS patients an added sense of fatigue. The mechanism may be the same as in disease-free patients; however, CFS produces a state in which patients are compensating, physically and emotionally, at their max. The extent of this disaster totally tips them over the top.”

Coping with the aftermath

Sept. 11 is more than a day branded into history, it is a day branded into our very beings. Words are inadequate to describe the horrific images broadcast on television and the magnitude of suffering. We wrestle with a flood f disordered emotions, random pieces of a puzzle we are trying to assemble.

On a very different scale, many of us have been here before. We are the victims of CFS/ME which has attacked our lives and worlds. We know what it is like to have our worlds pulled out from underneath us, to constantly feel as if we are dancing on marbles. We know what it is like to feel our safety nets have been removed. We’ve felt the wounds of betrayal and the obscurity of the future. We struggle to cope with all these horrors imposed by having CFS/ME, to not just survive but to bring an equilibrium back to our lives. Many of the same survival and coping methods we utilize to do so are the same methods necessary to cope with what the terrorists have imposed upon us and our world.

–Jon Herd, California

Survival tips for getting through the acute stress of Sept. 11 and the chronic stress of relapse range from the simple to the sophisticated. Nearly all experts agree that it’s best to limit exposure to potentially traumatic images. Patricia Fennell, CSW, a counselor to many PWCs, recommends taking in the news by radio than television: “Images are very powerful and can linger to create difficulties for you weeks later.” Return to routines as soon as possible. “The structure of your life is very important to your well being,” Fennell adds.

Make self-care activities like rest, good nutrition and limit-setting a priority. Dr. Berne’s prescription is emphatic: “Once we as individuals have done what little we can in the face of terrorism and its fallout, the area in which we have the greatest obligation and degree of control is right at home. Without self-care, we have little or nothing to offer others. Balancing the barrage of information with ‘time out’ to focus more positively on self-care allows us to normalize our lives to some degree, although we remain vigilant and concerned. We have met the challenges of living with relapses many times before, and the lesson, regardless of the enormity of the trigger, remains the same.”

CFIDS researchers and clinician Nancy Klimas, MD, of the University of Miami offers lessons from Hurricane Andrew. “A stress like Sept. 11 is not an acute stressor, with short term effects. It is a chronic stressor, with long-term effects. It is a chronic stressor, with long term effects,” she says. “These effects include immune and neuroendocrine changes and can result in prolonged relapse of CFS symptoms. However, you can modify the effects of stress through stress reduction measures. If you have a favorite technique (meditation, yoga, guided imagery, music, poetry), don’t stop! Now is not the time to break good habits and it’s a fine time to start new ones.” Community organizations, the Internet and self-help books can be good sources of information about stress management strategies, Dr. Klimas adds.

Leonard Jason, PhD, a CFIDS researcher and director of the Center for Community Research at DePaul University, suggests, “Grieving for losses can have positive effects, as can seeking social support from friends and family members.” Dr. Klimas agrees. “Don’t isolate yourself. E-mail is nice; human voices are better, and actual hugs and times spent together are the best,” she says. Dr. Papanicolaou reinforces the point with research: “In a study involving 90 male firefighters it was found that cardiovascular and cortisol recover after an experimental stress. I think it is paramount that patients with CFS draw on their social resources during these times.” Dr. Glaser’s studies document benefits to the immune system, too.

Beverly and I were asleep when the phone rang. It was 6:45 in Oregon, still a time at which phone calls are almost always bad news. I knew that my daughter Becka, a week shy of her 29th birthday, was planning to drive from her home in Pittsburgh to a convention of science researchers in Washington, D.C. So when the phone rang, I grabbed at it in fear.

“Dad, are you watching?”

I had no idea what she was talking about, but I was elated to hear her voice.

“You’re all right?”

“Turn on the TV.” Slowed by typical morning dullness, clumsy as usual after 13 years of CFIDS, not quite able to make anything work, I fumbled for the remotes in the bedside table. I got the TV on, got the dish on, but bumbled my way toward CNN. All the while, Becka was talking to me and I was relaying her messages to Beverly – not an ideal way for us to communicate, but my heart was racing again because of what Becka was saying.

Together, the three of us watched in horror as the scenes replayed. After Becka filled me in on the details, we watched in silence. And all day, I kept watching.

I couldn’t stop, even though I needed to stop. I couldn’t bear to watch, but I had to make sure nothing else happened. I had to call her.

That day, Sept. 11, 2001, and the week that followed was a lesson in fear and anger, shock and recognition, acceptance and endurance, despair and hope. You’d think, after all this experience at dealing with CFIDS, these would be things I was good at. The world seemed very sick, and sick is something I should understand. But in truth, we’re never good at horror, not if we have souls, not if we love. I knew how lucky I was to have so much in my life, to have Becka and Beverly to share this with, to have loved ones all around Ground Zero (I am from New York) who lived through it all.

But I was stunned, as I had been stunned in the first stages of falling sick in 1988, struggling to believe what could happen in our world. And I knew, deep in my CFIDS self, that it was time to go very deep inside and find endurance. Find acceptance. Because this – what I had been awakened to watch – is the truth, this is the world we live in.

–Floyd Skloot, Oregon

There seems to be broad agreement today that returning to “normal” is a rather nostalgic concept. Our world has forever changed in ways we can only begin to imagine. Sept. 11 marks a new way of living, more cautious, more vigilant, more tentative, than before. PWCs are masters of accommodation, of acceptance, of contingency planning, of adjusting expectations and priorities. But their challenges are even greater than they were on Sept. 10, before the globe’s attention turned to fighting terrorism. General relief efforts have tremendous momentum and worldwide support. The CFIDS community is a frontier for the kind of suffering many will experience in the wake of the disasters.

I feel the frustration of knowing that my CFS means I can only choose a few activities per week, and that my physical priorities are out of sync with my emotional and spiritual ones. This is an endless conflict for me, as I’m sure it is for many others. I’ve always shared many interests and concerns with my fellow community members and Americans nationwide, and have struggled with the limitations CFS imposes on my ability to participate in my community.

Since Sept. 11, it’s become even more obvious that there is a great need for people worldwide to bridge cultural and religious differences, so that we may work together for healing, peace and a better, safer future. This development changes nothing in my commitment to conquer CFS. Rather, it signals a new urgency for broadening my life so that there is also room for involvement as a local citizen, consumer of the media and church member. I do not know how I will honor my continued commitment to CFS research and advocacy and also find a way to participate in the diversity of my community and nation. While CFS remains my primary concern, I trust this will work out, and we will all find ways to reach out to others, so that we may contribute to the healing and rebuilding of our country.

–Rebecca Moore, New York</i

1 Star2 Stars3 Stars4 Stars5 Stars (92 votes, average: 2.70 out of 5)

Leave a Reply