Running Head: LEADERSHIP AND CHRONIC ILLNESS

Leadership and Chronic Illness: The Relationship Between Sustaining Leadership and

Living With Chronic Illness

Grace Howrigon

Siena Heights University

Leadership and Chronic Illness 1

Leadership and Chronic Illness: The Relationship Between Sustaining Leadership and Living

With Chronic Illness

The current research on leadership and chronic illnesses as single entities are extensive

and vast. What we often are not aware of is the two as a combination. This paper will break

down both leadership and chronic illness for what they are and then make a connection between

people living with such illnesses while also maintaining leadership or leadership positions. The

purpose of this study is to shed light and knowledge on a topic that is not deeply researched.

Leadership is not reserved for certain people; it is not limited to the healthy, or the loudest, or

race, or sex, etc. Both healthy individuals and individuals living with chronic illness are capable

of leading and doing it well.

This research is designed to bring together qualitative data on leaders living with chronic

illness, and the way they face adversity in the workplace. Using the narrative of an individual

and a phenomenological study of individuals living with chronic illness and leading, this study

will help us better understand how the two coexist and explain, if any, trends that may exist from

person to person.

This study is designed to answer one question. 1) How do people suffering with chronic

illness maintain leadership attributes?

Leadership

Leadership comes in all different sizes. It is hard to pinpoint a good leader; in a group of

twenty individuals you may receive twenty different definitions of a leader. Billie Bowe,

business consultant at Benchmark Consulting Services and author of “Let’s Talk Business: What

exactly is leadership?” establishes a clear vision of a leader. Throughout her numerous leadership

training sessions she has attended, she has gathered and thus given her experienced definition.
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Leaders understand that it is not all about them, they are inspiring, decisive, great

communicators, agents of change, innovators, knowledge seekers, flexible, risk takers, they

believe in their followers, they know how to form high performing teams, and are guided by a set

of defined core values (Bowe, 2015). There is no correct answer to what a leader is. Bowe writes

“similar to mentoring, they use their relational skills to establish trust and offer constructive

criticism by way of effective feedback (Bowe, 2015)”. In order for any relationship to work, trust

must be essential. Without it, it is nearly impossible to develop strong relationships, whether that

be personal or in the workplace.

Chronic Illness

Chronic illness, too, comes in all different sizes. Chronic illnesses include, “chronic

fatigue syndrome, endometriosis, fibromyalgia, HIV infection, colitis, Crohn’s disease, irritable

bowel syndrome, lupus erythematosus, lyme disease, migraine headaches, multiple sclerosis,

post polio syndrome, premenstrual syndrome, and thyroid disease (Vickers, 1997)” to name a

few. This research will help us to grasp what individuals living with these chronic illnesses face

on a day to day basis, and how they persevere. Simple health factors that go unnoticed everyday

by individuals without chronic illness, are ever-present for those with such illnesses. Often,

chronic illness is swept under the rug and not dealt with appropriately, thus creating long-term

effects. Margaret Vickers, lecturer at the Australian Graduate School of Police Management,

describes a chronic illness as an “on-going condition, physical, emotional, judgemental, or

cognitive that may or may not be treatable or curable” which combines with “an invisible stigma

(Vickers, 1997),” in regards to how it is often perceived by those surrounding the individual in

the workplace. According to the 2010 U.S. census data, “7.2% of people age 16 to 24 years (14.4

million) indicated difficulty finding or maintaining a job due to a physical or mental health
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condition (Brault, 2012).” Challenges that these individuals may face include communicating the

illness to the correct authorities so the proper accommodations are put in place, and maintaining

job performance (McGonagle, 2014). Vickers describes the adversity these individuals face as

simple as, “to tell or not to tell and why, when, where and to whom (Vickers, 1997).” These

challenges have been shown to cause long-term stress and damage to the individual, both

physically and psychologically (McGonagle, 2014). When handled appropriately, these illnesses

can be accommodated to improve worker performance and personal well-being with effective

interventions. This will allow workers a voice to manage these challenges and find ways to

prevent work strains to improve their well-being (McGonagle, 2014). Although some illnesses

are incurable or untreatable, there are ways to minimize effects and put in place the appropriate

accommodations to ensure the individual an environment where they are best able to flourish.

In a qualitative study written by Pia Asbring and Anna-Lisa Narvanen in 2004, the

authors discuss how women with chronic fatigue syndrome and fibromyalgia, both separate

chronic illnesses, define their strategies for gaining control and influence over the decisions

made with their healthcare providers. These specific illnesses appear to have overlapping

symptomology, both characterized by uncertain illness trajectories (Asbring & Narvanen, p.

227). Through the acquisition and analyzation of qualitative data based on extensive at-home, in-

person interviews, Asbring and Narvanen found that one way these patients were able to find

their voice in the decision-making process was to gain knowledge about their illness. Perhaps

this knowledge-based empowerment strategy can be applied to decision-making apart from a

healthcare setting. Perhaps the acquisition of knowledge about one’s illness would allow a leader

to engage in a sort of self-leadership, through the coping process.

Leadership and Chronic Illness

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According to Vickers, people with chronic illness face a sort of organizational dilemma

(Vickers, 1997). In other words, these individuals face challenges in the workplace beyond the

physical and emotional toll taken by the illness itself. Before beginning to work at one’s role as a

leader, an individual battling chronic illness must first overcome these barriers. Adversity looms

because a leader, even on her off days, must be genuine and authentic. She must live by the

values to which she holds her team accountable. She must encourage those around her to find

and use their voice. She must notice other acts of leadership and acknowledge them, let them

know they have been seen and heard. She must celebrate the achievements of those around her

while maintaining a balance between praise and constructive criticism. In his model, The 21

Irrefutable Laws of Leadership, author and leader John Maxwell refers to an old saying, “To lead

yourself, use your head; to lead others, use your heart” (Maxwell, p. 10). A true leader will

express her passion in a way that engages the people around her as, together, they build

relationships rooted in common values. Individuals must grab ahold of this passion as they fight

their own personal, inner conflict.

One tool these individuals might use to combat these challenges is communication.

Although, like McGonagle has shown, communication can be a challenge in itself, once

mastered, its effects can be of paramount potential. It is hypothesized that these effects might

allow for more understanding from others. Informing one’s team of his or her own weaknesses

establishes a sense of vulnerability, and in turn, one of authenticity, which is found at the root of

trust. Another, introduced by Asbring and Narvanen, is knowledge. These researchers claim “the

acquisition of knowledge about the illness, treatments, and so forth” has been shown to be

effective in “gaining control and influence over their own healthcare process (2004, p. 228).”

Although this study assessed the effectiveness of this tool in a doctor-patient relationship, it is
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hypothesized that knowledge about one’s own chronic condition will be an empowering tool for

overcoming adversity in the workplace. Having this knowledge would allow these leaders to be

more aware of their weaknesses and, more importantly, their strengths.

References
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Åsbring, P., & Närvänen, A.-L. (2004). Patient Power and Control: A Study of

Women with Uncertain Illness Trajectories. Qualitative Health Research, 14, 2, 226-240.

Bowe, B. (2015, April 01). Let’s talk business: What exactly is leadership? McClatchy – Tribune

Business News Retrieved from

http://search.proquest.com/docview/1667911568/F77B417A9CAD49F2PQ/1?accountid=

28644

Brault, M. W., United States., & United States. (2012). Americans with disabilities: 2010.

Washington, D.C: U.S. Dept. of Commerce, Economics and Statistics Administration,

U.S. Census Bureau.

Maxwell, J. C. (2007). The 21 Irrefutable Laws of Leadership (10th Anniversary ed.). Nashville:

Thomas Nelson.

McGonagle, A. K., Beatty, J. E., & Joffe, R. (2014). Coaching for workers with chronic illness:

Evaluating an intervention. Journal of Occupational Health Psychology, 19(3), 385-398.

doi:http://dx.doi.org/10.1037/a0036601

Vickers, M. H. (1997). Life at work with "invisible" chronic illness (ICI): The "unseen",

unspoken, unrecognized dilemma of disclosure. Journal of Workplace Learning, 9(7),

240. Retrieved from http://search.proquest.com/docview/198432075?accountid=28644