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A Couples-Focused Approach to Terminal Illness

An exploration of how couples navigate a terminal illness.

Key points

  • Asking what characteristics define a "good" partner of a person with a terminal illness fails to appreciate the complexity of the relationship.
  • A partnership bond is deeper than our conscious perception thinks it is. In real life, boundaries exist and yet remain highly permeable.
  • Underlying themes that help both partners work through a terminal illness include surviving the initial shock, becoming a caregiver, and more.
used with permission - gograph
Source: used with permission - gograph

How does a partner navigate through their loved one’s terminal illness? More specifically, what qualities are needed in a partner when their loved one is diagnosed with a terminal illness?

Although well-intentioned, I found the framing of these questions lacking. In my estimation, the focus on the individual partner proves inadequate to address the complexity of the more crucial question, which is how does the couple navigate through a terminal illness?

Although a terminal illness affects the individual, the line demarcating where an individual begins and ends in a dyad is far more complicated in real life where the depth of attachment blurs any well-intentioned boundary. Our bond to our partner is far deeper than our conscious perception thinks it is and the tight weave of our and our partner’s lives illustrates the nondual nature of the relationship where boundaries exist and yet remain highly permeable, where the selves merge in a committed long-term relationship and yet still remain separate. In a deep sense, we cannot escape the aphorism of “I am my beloved’s, and my beloved is mine."

So, through that question, I wanted to explore how a couple navigates their journey and whether there are certain character traits, personalities, and communication styles that make it possible for each to be present, engaged, comforting, and able to withstand the turbulence of this journey. Although the person with the terminal illness is going through their own plight, the partner is connected emotionally and physically to her partner’s distress as well as her own. They are inseparable and both need tending to.

So how do you proceed?

The psychological tragedy, or the initial shock of the diagnosis that has seized the couple, is just the beginning. The trials of being a partner to a loved one with a terminal illness are severe and wrenching. It will leave no part of you untouched and in the end, will consume both of you. And there is no available study material for this journey you are about to go on. No manual to refer to. You two are on your own.

Now, I do not mean to imply that there is no guidance for this process, as surely there is no lack of self-help material, well-intended advice with articles and studies written on this topic. There is no lack of relevant information. What I am simply stating is that despite all of it, the journey is utterly your own and yours to create. It is not easily matched to another’s journey, although similarities will exist. Your individuality and your unique relationship are the cast material that fills a singular mold with the resultant casting created purely and entirely from the amalgam of your two unique selves and your relationship.

Given the difficulty of this journey the partners are about to undertake, some just cannot make the commitment to stay. It speaks to the difficulty of the circumstance. It taxes people too much for them to see themselves staying with a partner who will pass away in months or years' time. Just the knowledge of the work ahead, the fear of loss, or the need to come to terms with a life changed in every way from what you both knew up to now is enough to cause a separation. For those couples who commit to staying together, I will offer the following concepts for your consideration:

  • How to get through the initial shock
  • Getting to know the disease
  • Naming the monster
  • Exploration of the Ring Theory paradigm
  • Communicating and sharing your experience
  • Harnessing vulnerability to widen your perspective
  • Expanding your distress tolerance and understanding the window of tolerance
  • Growing into maturity and developing new skills
  • Becoming a caregiver
  • What does it mean to “let yourself off the hook”?
  • Coming to terms with your own mortality and befriending death

In the coming months, we will take a closer look at each of these elements from the perspective of the couple as they navigate the journey through a terminal illness.

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