HOLIDAY ADVICE BY PATRICIA FENNELL IN WebMD

In the midst of a busy holiday season, it is more important than ever for those with chronic illness to communicate, advocate and maintain clarity around their capacities and needs. With the added concerns and precautions of navigating COVID-19, supportive conversation with loved ones is key to managing expectations and creating joyful holiday experiences.

Clarity & Advocacy

Chronic illness calls for clarity and advocacy. Friends and family need clear communication in order to manage expectations. Patricia Fennell (MSW, LCSW-R) coaches patients on how to negotiate their needs. "People don't know how to ask for what they need. They'll stay home from a holiday party because they can't stand that long. We need a new social etiquette for people with chronic illness." Fennell advises stating your needs in behavioral rather than general terms. "Don't just tell Aunt Jane you'll have to leave early. Tell her you've been feeling fatigued and can stay only two or three hours. Also, tell her that standing tires you out — ask her to have a seat for you. Putting it in behavioral terms makes it easier for Aunt Jane to conceptualize and to accommodate." 

Firm & Flexible Boundaries

No one understands your needs better than you. Pre-set boundaries are key in maintaining optimal health over the holidays. Having predetermined end times for hosted gatherings, as well as extra prep and post time built into your schedule for recovery can be helpful. Keeping departure time open ended at gatherings is a good idea, with a gentle way to excuse yourself when you're ready. The best boundary to feel comfortable with is simply, saying no when needed.

Ask For & Employ Help

When hosting, ask family or close friends to assist with cooking or other tasks that can be shared. "Asking in advance allows people to help gracefully." Order groceries or catering in advance and have it delivered. Hire extra support for pre and post clean-up. Prep as much as possible in advance and consider the use of disposable dishes and flatware when appropriate. 

Gratitude & Giving

The holidays can be an excellent time to reflect on what you are most grateful for, and to focus on the spirit of giving. "Take toys to the Marine Toys-for-Tots Foundation, take food to homebound seniors through Meals on Wheels, or provide goods and services to those in need. It will boost your spirit and remind you what the holidays are about."

The numbers of people with chronic illness are growing, and that's not necessarily a bad thing, says Fennell. "People are living today with heart disease and cancers that were once considered terminal illnesses, not chronic illnesses." Next time you are at a holiday party, or anywhere, look around. Some of those healthy-looking people may have chronic illnesses too. The growing numbers also mean you're not alone. 

Read full WebMD article

Contributed by
Jennifer Howard

Elements of Suffering in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome

Selected as an Editor’s Choice Article >

The MDPI publication, Healthcare, spotlights, "Elements of Suffering in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected," by authors Patricia Fennell, Nancy Dorr and Shane George. Healthcare is an international, peer-reviewed, open access journal (free for readers), which publishes original theoretical and empirical work in interdisciplinary medicine and health care research.

"Few people understand what it is like to live with ME/CFS. Trying to explain it to others can be exhausting and frustrating. I just found your wonderful article on ME/CFS in Healthcare which describes the physical, the psychological, and the social effects of this illness with compassion and clarity. It’s exactly what so many people, especially providers, need to hear. I will be recommending it widely."

—Lynn Fuentes, JD, PhD

MDPI Healthcare Article Abstract:

People who are severely and very severely affected by Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness. This review article examines the suffering of patients with ME/CFS through the lens of the Fennell Four-Phase Model of chronic illness. Using a systems approach, this phase framework illustrates the effects of suffering on the patient and can be utilized to help the clinician, patient, family, and caregivers understand and respond to the patient’s experiences. We highlight the constructs of severity, uncertainty, ambiguity, and chronicity and their role in the suffering endured by patients with ME/CFS. A composite case example is used to illustrate the lives of severely and very severely affected patients. Recommendations for health care providers treating patients with ME/CFS are given and underscore the importance of providers understanding the intense suffering that the severely and very severely affected patients experience.

ME/CFS and the Fennell Four Phase Model:

Fennell’s Four-Phase Model is useful for defining and describing four phases that occur in ME/CFS. This model has been thoroughly developed over the last several decades through clinical encounters, patient testimonies, and empirical research. The model explicitly captures the changing experience of patients over time in all domains of their lives — their physical, psychological, and social-interactive worlds. 

The full text of our Healthcare article contains a section describing the course of ME/CFS using the Four-Phase Model to help illustrate how patients present in the physical-behavioral, the psychological, and the social-interactive domains during each phase of the model. The general description of the three domains in each phase includes a table outlining its characteristics. A composite case history illustrates how these generalizations manifest in actual patients, focusing on those who are severely and very severely affected.

By serving as a narrative or cognitive map, the phase description helps to lessen the intense fear and anxiety frequently experienced by the severe and very severely affected ME/CFS patients and their families. It will also help them to know they are not alone, their experience is shared by others, and they are understood. They now have a method of validating their experiences and making them known to others. The narrative helps them develop a sense of what is happening to them and provides a degree of order and coherency about their illness experience. In addition, the mapping aspect of the phase process helps promote understanding and adjustment to the cognitive impairments in concentration, memory, and decision making that often affect those with ME/CFS.

How Health Care Professionals Can Help

Severely and very severely affected patients suffer profoundly. For health care professionals to adequately treat their patients, they need to understand all that composes and creates their suffering: struggling with uncertainty, ambiguity, chronicity, stigmatization, trauma, and rejection. These elements create losses for the patient, and they subsequently grieve these many and varied losses, including lost friends, family, career, and life as they knew it (or imagined it). Not only do the patients grieve their losses and traumas, but so do the loved ones around them — spouses, parents, and children. Thus, to assess and treat, the suffering must first be described, understood, witnessed, and, most importantly, abided. Please see our full article in Healthcare for a list of important things health care professionals can do to help, in addition to the medical protocols.

• Read the full article: "Elements of Suffering in MyalgicEncephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief,Stigma, and Trauma in the Severely and Very Severely Affected" 
  
  
• Read more: Fennell Four Phase Model 

 

Contributed by
Jennifer Howard