Chronic Illness: The Unwanted Guest That Just Won’t Leave
(A Fictional Vignett)
Great Aunt Haddie wrote and asked if she could visit our family for about 5 days? We loved Aunt Haddie but knew the visit would create a hardship and adjustment as a family. Suddenly we re-read the letter and realized she was coming tomorrow!! Oh my!!
We quickly got out the calendar and divided up the responsibilities for her visit. The kids would have to keep their toys pick up so she didn’t trip. We would have to gather up all of the rugs so she didn’t topple as well. We designed special meals and a few outings we hadn’t planned on in our calendar or our finances. We had to convert the home office back into a guest room. Twenty-four frantic hours of planning and we were ready for her visit.
She arrived, a little tired and grumpy from her travels, but we accommodated that, encouraging her to settle in and rest a bit. She did. She rested a lot! We had to wait for her a lot! We had some good chats and she was still our Sweet Great Aunt Haddie. Yet we were soon counting the days of her departure. We could do this – only 1 more day and 4 more hours!!
The night before she was ready to leave – she asked if she could stay 2 more weeks! We said it would be rather difficult with our schedules and all. She nodded smilingly but said she needed two more weeks before she could return home. We decided as a family we could do that for her. We continued our adaptation of our home as we had for her 5-day visit. We continued to adapt our calendar, our lifestyle and our living arrangements.
Close to the end of her extended stay she shared over dinner one evening that she really hadn’t been honest with us. She really didn’t have a home to return to. She was hoping we would let her live with us on a permeant basis. WHAT?! NO!! This couldn’t be happening!
After looking into her financials and previous lodging arrangements we realized she really had nowhere to live or enough money to live off of. We stated at each other. We now had a permanent Guest!
What had worked nicely for the first 5 days, and challenged us for the following 2 weeks, was NOT going to work for this permanent guest. The adjustments for the brief visit we had energy for. The energy and requirements for a permanent change was far more.
We put in a ramp. We hired someone to run errands with her through a volunteer program 2 days a week. We introduced her to community services she could get involved with. We dedicated the downstair room and bathroom as her area only. That became her own private space. We refocused our attention back to addressing the individual needs of each family member. Rather than accommodating a visitor which takes one kind of energy, we transformed into a larger household as our family unit.
When we are hit with a sudden illness or trauma – it interrupts everything. We never schedule it. Many adjustments are instantly made to accommodate the needs of the illness and the ill member. Individuals and families usually have the ability to make the changes needed for a brief time.
When the sudden illness changes to a chronic illness a different energy is required. We can’t just give a little more to the needs at hand. Although that is what we try to do! We attempt to adapt the same style of management to a sudden illness as we do a chronic illness. The chronic illness doesn’t just need adjustments – a chronic illness needs Transformation!
The individual or family system does not have the resources to simply accommodate long term. The system needs to transform into a system that incorporates the changes needed.
Boundaries need to be set. The illness is no longer the focus of the system – the individual needs of each family member goes back to being the focus. The illness which had been centerstage now moves to the side or more on the periphery. If you turn your head slightly you know it’s there but it is NOT always in your vision.
For the short term the individual or the family can give all their resources and reserves to attend to the illness. Soon the reserves are depleated and resources run dry. Transformation incorporates the system balance is maintained for everyone.
Chronic Illness - something that starts simply as an illness with a beginning, a middle, and an end - suddenly morphs into a prolonged visit and then a permanent visitor. This metaphor for a chronic illness can be helpful as we use our cards to:
Create a space for the unwanted guest
Setup boundaries for the unwanted guest
Learn how to support the unwanted guest without losing our own way
And last but not least “What does the unwanted guest have to offer you?”
As a Marriage and Family Therapist with a PhD in Nursing, I specialized working with individuals and families with chronic illness. We know how to manage a cold or flu. However, a chronic illness needs management just like an acute illness does - however it is not short lived! My dissertation research “Chronic Fatigue Syndrome and the Marital Relationship” I learned a lot about how people managed their chronic illness. What worked and what didn’t.