“What about us?”
I was confused when I heard the question over the phone line. Two members of my extended family had just been told that I was scheduled to undergo my first open heart surgery the following day. And their initial response was to ask a question, not about me but about them. They were upset that they had not been told about my illness earlier and wanted to know, “What will we tell people when they ask why we did not know you were sick?”
I was flabbergasted. Lying in my hospital bed, hooked up to a machine keeping my right lung inflated, I was receiving a last-minute education about heart surgery preparation and recovery. And somehow, these two people had made this situation entirely about them.
Many people have similar reactions to a loved one’s illness; they appear to view the situation only in light of how it will affect them, almost obsessively at times.
And after 20 years of witnessing this phenomenon in some of the folks close to me and a multitude of people supporting those I serve, I have come not only to accept this behavior but to encourage it.
Because what is true is that the situation is about them, at least when viewed through the only lens they may be able to access. And I believe that we all benefit — both patients and their loved ones — when the loved ones choose to actually look through that lens, so they can put it aside at the times when it is essential for them to do so.
When you love someone with a chronic condition, it absolutely is about you — both in ways obvious and large and in others more small and subtle.
Clearly, when someone we are in relationship with experiences something that drastically changes their lives, it is likely that our relationship with them will change as well. Perhaps we will now spend more time with them, perhaps less. Maybe their ability to be present in and focused on our lives diminishes; sometimes it increases. Some of us will become physical caregivers, while many of us will attempt to share support from afar.
Our lives change as our ways of relating to one another transform. And as a result, there often arise many feelings: grief at the loss of aspects of our relationship, fear about the ways our lives will be affected, even resentment for the new roles we are asked to take. When you experience any of these or similar emotional responses to a loved one’s illness, please express them — not to the loved one, but to someone else. Unexpressed emotions do not disappear; rather, they fester, often presenting in unhealthy or even harmful ways.
Less obvious, but equally as significant, are what may be ideas, beliefs and judgments that influence our ways of interacting with loved ones experiencing chronic illness. If I have not confronted my need to be the center of attention, it surely will present itself now. My own fears of encountering pain will arise as I watch my beloved receive treatment. My carefully constructed conviction that illness is a result of negligence rather than bad luck? That likely becomes a judgment I hold against my sick friend.
All that stuff — the big and small responses you have to your loved one’s chronic conditions? They feel it.
We feel it. Many of us are even hypersensitive to it. We worry about you with no way to express that or to help.
So I invite you to turn toward these emotions, ideas and opinions. I ask you to explore them with curiosity and tenderness. Do not do this with us. Rather, do this with a therapist, a clergy member, a beloved friend, your journal, a blank canvas. Make our chronic condition all about you when you can, so that when we need support and care you can make it about us.