38 msfocusmagazine.org It is no surprise that people who have chronic illnesses are going to need a helping hand now and again. MS is a chronic, progressive disease, and let’s face it, some days we need that extra care. To make sure we get the help we need, we must be prepared for relapses or other issues that arise. I encourage people to get a supportive caregiving system in place early, so when a relapse or major issue occurs, we have our team at the ready. Collective buoyancy When I think of a caregiving team, it reminds me of a story in the news not too long ago. During recent floods in the southern states, newscasterswarned people to be careful about what might look like a clump of soil floating in the water. The reason? They were floating mounds of fire ants! When fire ants are in a flood, they band together and form a living raft. By holding tight to one another they become buoyant and are therefore able to survive the floods. If someone were to push on this floating mass, they would surely suffer the ants’ bite, but the ants would not sink. If the ants didn’t stick together this way, their colonies would not survive. Let’s compare those fire ants to those of us with MS. When a ‘flood’ – or for us, a relapse – strikes in our lives, how do we survive it? The world doesn’t stop simply because we are experiencing difficulties with our disease. We need to band together with our ‘colony’ to stay afloat. Very often, we lean intently on our spouses or partners for assistance. They tend to be our first line of help. Sometimes, we may also lean on our children or our parents as our caregivers. Depending on how deep our ‘flood waters’ are – how much help we need – this may be enough. But we do need to consider it carefully. Family systems theory (a form of human behavioral science that looks at the inter-relationships and inter- connectedness of a family) tells us that we can overburden relationships, causing burnout. In other words, if we lean on one family member for constant care, this can cause chronic stress and burden on the relationship. Frequently, this causes the relationship to burnout, or end. Keeping us afloat However,we can choose to build caregiving teams that extend far beyond just blood relatives. In my house, we like to think of this as creating an “intentional family.” The members of our intentional caregiving family are not only relatives and friends. Exclusive Content Stay Afloat: Build a “Caregiver Colony” "Intentional families” help us to survive the MS floodwaters By Darbi Haynes-Lawrence, Ph. D