Mitigating Existential and Spiritual Distress: Part I The Gift & Introduction to Definitions

(A 6-Part Series)

From: Spiritual Direction in the Care of the Sick

PREFACE

Illness and injury are universal human experiences. Whether through our own suffering, that of a loved one, or in accompanying a directee or retreatant, each of us will be touched by physical vulnerability. Hospital chaplains often meet patients at a critical juncture—sometimes only once or twice—while hospice chaplains walk closely with those nearing death. Spiritual directors, however, may accompany someone monthly over many years. The likelihood of walking alongside someone who is facing serious illness or chronic pain is high. This series is written to help spiritual directors grow in awareness, compassion, and practical wisdom as they serve in this deeply personal and sacred encountering.

Personal Story: As a Person Who Became a Patient

After a disabling injury and an unrelated illness made it impossible for me to continue my practice, I found myself questioning God's plan. It was a time of great uncertainty, emotional and physical suffering. It took me a while to realize God's compassion was ever-present. Along with my family, we I was led to Lourdes, each of us was seeking healing and solace. There, I received the grace of healing from the illness, though not from the biomechanical injury. As a result, I remain partially disabled and unable to return to clinical practice at a sustainable level.

However, this limitation soon became an invitation to what I initially thought was a detour. While in treatment, I pursued a lifelong desire to study theology. Only as I look back did I see finger of God was all along writing a new story that became my source of strength and His wisdom. This long journey ultimately led me to where the Lord has placed me today—as a Catholic spiritual director, accompanying others on their own paths of healing and discovery. I now see that even in the midst of my own pain and loss, God's plan was unfolding with unwavering love for a purpose for me to be a link in a chain.

INTRODUCTION

Thematic Foundation: Many who are seriously ill experience not just physical suffering but also a deep existential and spiritual struggle. The role of a spiritual director is not to diagnose or treat as in pastoral counseling, but to listen, accompany, and help the person discern God’s presence and purpose within the experience. Here you can explore through self-study how it is to engage a person, who has become a patient, their suffering, and to hold space for the Mystery of God grace to be poured upon their entire being body and soul.

Who This is For: *This 6-part series is designed for spiritual directors who accompany ( or will accompany) individuals facing life-altering illnesses or injuries, as well as those who serve as caregivers. It draws upon presentations I have offered to spiritual direction interns, nursing students, nurses, and parishioners involved in ministry to the sick and homebound. The content is shaped by my background in family practice as a chiropractic physician, my years of service as an on-call chaplain at Yale New Haven Health, and my ongoing work as a patient advocate and spiritual director accompanying individuals through illness and suffering.

This work reflects my notes collected from books, seminars, and practical experience with thousands of individuals who became patients. This experience has provided me with a wealth of insights from various sources. While I claim no personal credit for the work's originality, yet it is deeply personal to me.

WHAT IS HERE:

Part I: Introduction - The Gift of Relationship

Part II Signs & Symptoms

Part III Listening & Assessment

Part IV The Narrative

Part V Human Development

Part VI Offering Scriptures

PART I: THE GIFT OF RELATIONSHIP

TO BE KNOWN IS GIFT

Any intervention must be nested within the foundation principle of gift: for one offering a gift of presence that honors and makes way for the beauty within of the person to emerge and for the person to experience the felt-feeling of being seen and known as gift and as the beloved of God.

Relationship

We are conceived within a relationship, born into a community of relationships and develop as a person through relationships. When our life becomes fractured, our relationships, with ourselves and others, are disrupted. Experiencing limitations due to health concerns, or concerns that have affected our health may bring on existential/spiritual distress.

Mitigating existential and spiritual distress in the care of a person, who has become a patient, is to help support the re-establishment, or create new avenues, of relationships. There are various tools to assess where one has landed in this new world of with its fractures, which give rise to a care plan with the interventions. Let's begin!

PART I: DEFINITIONS

The PALLIATIVE CARE FRAMEWORK

The focus of palliative care is to provide specialized care for people living with a serious, complex, or terminal illness. The goal of Palliative Care is to mitigate suffering. It aims to increase the patient's quality of life as the condition progresses, rather than only treat the disease or its symptoms. Palliative care can occur at any stage of illness, and it can be provided alongside curative treatments.

Spiritual Direction being offered to one who has become a long suffering patient, gives hope.

It falls within the Palliative Care Framework.

THE HUMAN PERSON

The model of the human person in health care today regarding assessment and treatment within the Joint Commission on the Accreditation of Healthcare Organizations (JCAHO):

The human person is one psychophysical, sociocultural situated, spiritual being.

And the view, based upon acceptable research is that spirituality and religion can play a role in supporting and enhancing the physical and mental health of patients. Therefore, it should be part of the assessment and care of the person as patient.

“DISEASE, THEN, IS SOMETHING AN ORGAN HAS; ILLNESS IS SOMETHING A MAN HAS.”

Eric J. Cassell, 1978

We have no biomarkers for the illness

Disease is the pathophysiology, while illness is the experience of living through the disease. We can measure biomarkers of the disease framework but the ‘‘illness” we cannot measure feelings and frustrations. For chronic illnesses or even severe acute states the experience of the illness lingers for longer after the recovery.

Karen Shields Wright

HEALTH, DISEASE, ILLNESS, REACTIONS

What is HEALTH: Secular & Catholic View

• “Health is a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity”. WHO

Note: I know no one who is in a state of complete anything according to this definition.

• "Health is the dynamic tension. Towards physical mental, social and spiritual harmony not only the absence of illness, which gives him the ability to fulfill the missions that has been entrusted to him, according to the state of life in which he finds himself." St. Pope John Paul II

Note: Someone can be emotionally or spiritually ‘healthy – in harmony’ in the midst of a physical disease.

What is DISEASE

"Disease – best refers to an abnormal condition affecting an organism. This abnormal condition could be due to infection, degeneration of tissue, injury/trauma, toxic exposure, development of cancer, etc.” https://docente.unife.it/judithteresa.balari/extra-material/articles/disease-vs-illness.pdf

What is ILLNESS

“Illness – best refers to the feelings that might come with having a disease. Feelings like pain, fatigue, weakness, discomfort, distress, confusion, dysfunction, etc. – the reasons people seek healthcare –and usually, the way people measure their success with treatment.

It’s very important to understand that feelings of illness can be vastly affected by many non- disease factors, such as expectations, beliefs, fears, feelings/moods, and culture. Being ill is a very personal experience, and can vary tremendously and be affected by very different things between people with the same ‘disease’." https://docente.unife.it/judithteresa.balari/extra-material/articles/disease-vs-illness.pdf

REACTIONS

One’s initial reaction to being diagnosed as an experience of desolation where one can become angry, withdrawn, hostile or aggressive with anxiety and depression. Once one accepts their illness and able to face the reality with a sense of humble acceptance, they may experience a sense of consolation.

NEEDS, DESIRES, LOSS, COPING

7 Universal Innate Desires

Our lives are shaped by the things we desire. Thomas Merton

1.     To be seen

2.     To be heard and understood

3.     To be affirmed

4.     To be held

5.     To be chosen

6.     To be blessed

7.     To be safe

Note: Listening within the Fragmented Narratives for fulfilled or unfulfilled desires.

3 Basic Needs for Well-Being

•      Autonomy

•      Competency

•      Relatedness

What is Loss

When a person becomes a patient they enter into a different world. Examples of objective and subjective losses when one experiences an illness:

•      Loss of Self-Identity

•      Loss of Independence & Autonomy

•      Loss of Certainty & Control

What is Coping

Coping is a strategic way to reduce our internal negative emotions/feelings as we try to address a stressor challenge, either proactively or reactively (overlapping with our built-in defense mechanism), such as when our deepest desires, basic needs, or perceived wants are not met. The strategies can be healthy or unhealthy (maladaptive).

Four areas in coping strategies: 

1. Problem-focused strategies – taking control, informal seeking and evaluating pros and cons.

2. Emotion-focused coping strategies – managing emotions via releasing pent-up energy, distracting or distancing, relaxation practices such as meditating, seeking social support, reappraising, and accepting.

3. Support Seeking – Reestablishing and creating new relationships to self and others.

4. Meaning- Making: reformulating former activities that were meaningful or finding new avenues that are meaningful.

Maladaptive coping examples: avoidance, disengagement, self-blame or dissociation, self- medication.

DISTRESS, PAIN, SUFFERING

What is DISTRESS

One experiences distress when one feels unable to cope or out of their depth, stress that negatively affects one ability to function optimally. Overwhelmed to point of panic, overcome by a sense of dread. An experience of disquietude, heartache, malaise.

What is PAIN

The pain is usually described in neurological terms as a somatosensory perception that signals the individual that tissue damage has or is occurring, thus forming a mental image in the brain followed by an unpleasant emotion as well as changes in the body that tissue damage has occurred (called nociception). Yet the experience of pain, pain tolerance or one’s pain threshold is based upon one’s perception of pain that is influenced by one’s cognitive awareness, interpretation, behavioral disposition , and one’s educational and cultural factors.

Today we look to the understanding of the human person as a psychophysical, sociocultural situated, spiritual being and their experiences to relieve pain and suffering.

Pain and suffering are experiences which affect the whole person. Both have bodily, psychological, and social cultural, and existential or spiritual dimensions. Mental and spiritual pain will drive one toward the inside of oneself.

What is SUFFERING

Suffering is an all-encompassing state within the human person – it’s an embodied experience.

Suffering is an anguishing experience beyond pain, it involves the whole person - one’s physicality, their mental and emotional state, beliefs, expectations as well as their spiritual orientation. Its source may not originate from an illness or physical pain, though it can cause one to develop dis-ease then disease. Sources of suffering can be social problems such as poverty, relationship concerns, grief.

On the existential dimension there are two universal characteristics experiencing of suffering: 1) ‘as an alienation of the self ‘or 2) as an ‘unhomelike being in the world’.

Suffering may be so extreme that someone may not know why, or they may be unaware of their own suffering. Such sufferings can be gleamed from stories that we tell ourselves that are partial and fragmented.

Note: The importance of the Narrative. See Part IV

Reflection Questions: Part One – Definitions

I. Relationship, Presence, and the Palliative Framework

1. “To be known is gift.” In your ministry as a spiritual director, how have you fostered a space where the directee (the person as patient) can feel seen, heard, and be honored as a gift, even in their current state, recognizing that every human being is created in the image and likeness of God? Consider how Jesus affirmed the dignity of all, regardless of their circumstances.

   
   

2. Reflect on a time when your presence (more than your words) served as an intervention. What graces emerged from simply being with another in their suffering, recalling that Christ identifies Himself with those who suffer (Matthew 25:40)? And the king will say to them in reply, ‘Amen, I say to you, whatever you did for one of these least brothers of mine, you did for me.’

   
   

3. Palliative care focuses on quality of life and the mitigation of suffering. In what ways do you see spiritual direction as part of the palliative team, aligning with the Church's emphasis on holistic care that addresses spiritual, emotional, and psychological needs?

II. The Human Person: Integrated and Spiritual

4. How does your image of the human person in suffering reflect Christ in His Passion influence the way you accompany others through their pain, loss, and uncertainty? What comes up for you in your own pain, remembering that sharing in the sufferings of Christ is a call and a vocation?

   
   

5. How have you noticed a spiritual or existential distress behind a directee’s physical suffering, recognizing that Christ's healing extends to both the body and the spirit?

   
   

6. When has your own view of “health” (physical, emotional, spiritual) shifted as a result of comparing definitions of health? How do you imagine walking with someone through chronic or terminal illness in St. John Paul II’s definition, keeping in mind that God wills to enter our grief and that faith illuminates suffering?

   
   

III. Disease vs. Illness

7. Reflect on the distinction: “Disease is what an organ has. Illness is what a person has.” How does this shape your listening as a spiritual director, recalling that Jesus focused on the person, not just the ailment?

   
   

8. How have you responded, or imagine you would, when someone’s medical “recovery” they have been pronounced ‘cured’ doesn’t match their ongoing experience of that illness, remembering that suffering is a mystery and that those who suffer with Christ are blessed?

   
   

9. In what ways do you find yourself invited to hold space for the unmeasurable—feelings, fears, or narratives that fall outside your clinical understanding, aligning with the call to honor everyone whatever their circumstances?

   
   

IV. Needs, Desires, Loss, and Coping

10. As you listen to fragmented narratives of illness, how have you noticed how one discerns between basic needs, deep desires, and expressions of loss, keeping in mind that we should put up with the failings of the weak and build up our neighbor?

    
    

11. Which of the 7 Universal Innate Desires do you most commonly hear echoed—either explicitly or beneath the surface—in the stories of those you accompany, recognizing that God loves every man and woman with infinite love?

12. Reflect on your own inner response to your directee’s loss of autonomy, identity, or certainty. Where are you invited to grow in holy detachment or deeper empathy, remembering that we are called to love our neighbor as ourselves?

    
    

13. How have you witnessed the transformation of a maladaptive coping mechanism into a healthy, grace-filled strategy, recalling that by doing right, we silence the ignorance of the foolish?

    
    

V. Distress, Pain, and Suffering

14. How have you, or see how you would, differentiate between physical pain and existential suffering in your conversations with the person who experiences an illness, recognizing that Christ took upon himself our sufferings?

    
    

15. What practices help you remain grounded when someone you accompany is in profound distress, recalling that God comforts us in our afflictions?

    
    

16. How do you help a person listen for the silent or fragmented stories they are telling themselves—perhaps unaware—that have risen from the deep part of their suffering, remembering that suffering, when accepted with love, becomes the key to eternal victory?

    
    

17. Suffering is often described as “an unhomelike being in the world.” Have you experienced this yourself? How does this awareness affect your compassion for others, aligning with the call to welcome one another and to show solidarity?

Bio

Dr. Karen Shields-Wright is a spiritual director, retreat director, and supervisor who has been affiliated with a virtual Ignatian retreat center dedicated to deepening the life of prayer and spiritual accompaniment within the Catholic tradition. Additionally, she serves at the Murphy Center for Ignatian Spirituality at Fairfield University.

Through her ministry, she accompanies individuals in their journey of faith, offering one-on-one spiritual direction, guided retreats, and the Spiritual Exercises, especially for those discerning the ministry of spiritual direction. In this role, she also brings her background in clinical care and pastoral presence to support those facing serious illness, as well as those who minister to them.

She is a Dame of Magistral Grace in the Order of Malta, American Association, where she serves on the St. Bernadette’s Ministry Palliative Care Committee. Dr. Shields-Wright is also a Catholic Social Teaching educator with the USA Chapter of the Fondazione Centesimus Annus Pro Pontifice, an international Vatican-based organization founded by St. John Paul II, committed to promoting the Church’s social doctrine in service of the common good.

Her work reflects a lifelong integration of faith, healthcare, and pastoral care—guided by the principles of Ignatian spirituality and a deep commitment to the dignity of the person.