Joy H Selak, PhD
Recently I was a speaker at a patient conference attended primarily by chronically ill patients and their family members or caregivers. After my talk, a note was passed up to me from the audience. The question was from a healthy spouse, “If my partner is too fatigued to do something we had planned, what is my role?”
I first said I wished my husband was with me to answer, as he has been so wise in navigating these difficult times of long illness and uncertainty, good days and bad. His constancy has deepened and strengthened our relationship, and is one of the silver linings of my illness. My simple answer was, “If a partner cannot do something you planned, you might ask if there is anything they need from you. If the answer is no, then I’d say you are off duty and should feel free to go on with the plans on your own, if that is your preference.” This is basically what we do in our home.
I realize developing this balance is not simple, and working out how to manage this new partnership is challenging. Tension and misunderstanding can arise from several common behaviors.
- The sick partner is not clear and honest about how they feel on any given day, either understating symptoms to be brave, or overstating them to try to convince a spouse how miserable they are.
- The healthy partner is desperate to ‘fix it’ or to ‘do something’ and is over involved in treatment and lifestyle decisions that are more appropriately between the patient and their health care provider.
- Both partners pretend things are other than the reality, so neither one can effectively offer, or receive, help and support.
My husband says, “It is Joy’s job to find out what is wrong and decide what to do about it. My job is to support her decisions.” This clearly defined and shared responsibility has made things easier on both of us. I have to work hard to learn about my condition and make treatment and lifestyle decisions that will support my health and healing. He is there for me whenever I need him to be. This would include coming with me to appointments when I am too sick to think straight and helping me clarify the results of the meeting. And it would include going on with his activities and leaving me alone when I am too fatigued to talk or be decent company for him.
If you are the healthy partner or caregiver in your relationship, what have you found to be successfully strategies for navigating illness?