How to cope with a terminal illness

Grabbling with all the feels and changes as your world has been flipped upside down

Learning and dealing with a terminal illness is world-altering, as the ground below you shifts with every step.

Life is finite. However, most of us walk through life assuming we will live forever. Maybe not forever, but our death is some far-off experience. As we age, we start to process that our life is, in fact, finite. However, some of us do not get the grace of aging into our golden years. Finding out you are dying is devastating, regardless of what stage of life you are in.

Erik Erikson’s psychological developmental stages can support us in understanding our experiences when faced with a terminal illness (Despelder, L.A., 2020).

Young Adulthood

We are considered young adults between the ages of 21-39 (Despelder, L.A., 2020). During this time, we are working on who we are and developing intimate relationships (Hamachek, D., 1990)

When we have a sense of intimacy, we display a sense of who we are; we are tolerant of differences in others, we trust others and ourselves in relationships, we can form emotional bonds without fear of losing ourselves, can express emotions, can be alone, and can compromise (Hamachek, D., 1990).

When we are unable to achieve intimacy, we often isolate, do not have a firm identity, struggle with tolerating differences in others, do not trust ourselves or others in relationships, are hesitant to form bonds, can be competitive in relationships, fear losing self in relationships, have difficulty expressing emotions, and find relationships to take from ourselves (Hamachek, D., 1990).

During this stage, if we have a terminal illness, we work towards love and affiliations with others. We are moving away from loneliness and indifference (Andrews, 1981). Further impacting our task of intimacy versus isolation is relapse, treatment failure, pain, and reflection on illness (Andrews, 1981). Thus grief during this stage can impact our levels of intimacy and isolation.

Middle Adulthood

Next, we move into adulthood, which is ages 39-65. During this stage, we are working through generativity versus stagnation/self-absorption (Despelder, L.A., 2020).

People with a sense of generativity are personally concerned about others and the world, have the desire to make the world a better place, focus on what they can give to others, are involved in activities outside of self, they desire to contribute to society, have other-centeredness values and attitudes, work to enhance their knowledge, express creativity or learn a new skill (Hamachek, D., 1990).

People with a sense of stagnation and/ or self-absorption are concerned with self over others, have little involvement in making work/life for younger generations better, have little interest in children or children's welfare, are focused on what they can get, are absorbed in self and needs, display self-centered values and attitudes, have little desire to be a productive member of society, and focused on self-preservation (Hamachek, D., 1990).

During this stage, those with a terminal illness work towards nurturing relationships and a sense of direction that will not subside into boredom and emptiness (Andrews, 1981). During this time, they are focused on rehabilitation plans, long-term treatment and treatment failure (Andrews, 1981).

Older Adulthood

Lastly, we enter old age, which is 65 and older. During this time, we enter the stage of integrity versus despair.

People with a sense of integrity believe who they are is due to their choices. Their life is of their own doing, they have an acceptance of death, can openly admit to themselves and others that they are responsible for what has happened in their life, they feel no one is to blame for troubles or failures, they look back on life with gratitude and acceptance, tend to be an optimistic and happy, approach end of life with a sense of wholeness, can integrate past with current realities (Hamachek, D., 1990).

People with a sense of despair tend to reflect negatively on the past, feel they did not have control over what happened to them, lack personal responsibility for life choices, have a fear of death, blame others for failures and troubles, reflect on life with despair and regret, tend to be unhappy and pessimistic, they approach the end of life with incompleteness and stuck in blame and disappointment (Hamachek, D., 1990).

During this stage, being diagnosed with a terminal illness, we reflect on our lives, sharing them with others or fall deeper into isolation and depression.

If you have read my blog or are familiar with me, you know I am a counselor with over ten years of experience. I am also a thanatologist. I work with death, dying, and grief from biological, ethical, sociological, cultural, spiritual, physical, medical, somatic and psychological perspectives.

We are all going to die. We must be able to face our mortality. When we don’t, we can experience anxiety and depression. When we face our mortality, we are able to engage in life.

If you are dying

As a young adult, it s important not to isolate. Engage with peers, support groups, and families. Find ways that you connect and build intimate relationships.

As a middle adult, start to discuss and work through your mortality. When you can explore and process your mortality, you can move into generativity. How do you want to give back to the world? How do you want to leave the world a better place?

As an older adult, take time to look back at life with gratitude and acceptance.

Regardless of age, you will experience many griefs: loss of function, body parts, mobility, relationships, finances, housing, capabilities, independence, changes in your body, and cognition. Seek support from nonjudgmental, empathetic people.

Regardless of the stage of life, you are in, don’t forget to have your:

Advanced directives: instructions for your medical care, especially if you cannot communicate these to medical staff or others. In the state of Colorado, this does not need to be notarized. You do need two witnesses’ signatures.

Will: instructions for what will happen to your belongings once you are dead. In the state of Colorado, this does not need to be notarized; you do need two witnesses’ signatures.

Funeral planner: who will be responsible for your funeral when you are dead? Communicate with the funeral planner, friends, and family, and leave it written somewhere: how do you want your body disposed of? Where do you want your funeral? At home? At a funeral home? How do you want your funeral? How do you want to be remembered?

Tie-up loss ends: make your peace, say your goodbyes, and create a list of accounts and information that need to be tended to once you are dead, including login information for all your accounts.

Share your stories, your memories, and leave your legacy!

We don’t want to think about death, especially our own. However, there will come a time when we learn that we are dying. If you are in this space, seek loving and supportive relationships, work on your bucket list, and plan your legacy.

References

Andrews, P. (1981). Developmental tasks of terminally ill patients. Journal of Religion & Health, 20(3), 243–252. https://doi.org/10.1007/bf01561185

Balch, B. (2017). Death by Lethal Prescription. Generations: Journal of the American Society on Aging, 41(1), 42–46.

DeSpelder, L. A., & Strickland, A. L. (2020). The last dance: Encountering death and dying.

McGraw-Hill Education.

Hamachek, D. O. N. (1990). Evaluating self-concept and ego status in Erikson's last three psychosocial stages. Journal of Counseling & Development, 68(6), 677–683. https://doi.org/10.1002/j.1556-6676.1990.tb01436.x

Johnsen, I., & Tømmeraas, A. M. (2021). Attachment and grief in young adults after the loss of a close friend: A qualitative study. https://doi.org/10.21203/rs.3.rs-858103/v1

Sekowski, M. (2020). Attitude toward death from the perspective of Erik Erikson’s theory of Psychosocial Ego Development: An unused potential. OMEGA - Journal of Death and Dying, 84(3), 935–957. https://doi.org/10.1177/0030222820921604