Cultivating Resilient Relationships in Chronic Illness and Long-Term Caregiving

Every few nights, I wake up my husband from his peaceful slumber. I timidly touch his shoulder. “Matt,” I whisper. “I need you to tell me I’m going to be okay.” I wait for him to shake the sleep off and let me cry on his shoulder again.

It’s not just the physical pain in my left foot and ankle but the anxiety and fear attached to it. Is this going to be my future? I’m only 22—it isn’t supposed to be this way. I don’t think I could bear losing the ability to walk. Each thought loops around my body like a vise, tightening until I can’t breathe. This has happened on a regular basis for months ever since I realized that my pain might be chronic.

But this time, Matt rolls over and mutters, “Can’t it wait until morning? I have to go to work tomorrow.”

Long story short, I had a full-blown panic attack in the living room and my husband had to get up anyway. He held me tight until the anxiety drained out and I went back to bed realizing he is a finite human being too.

Bolstering the Caregiver-Receiver Relationship

Chronic health conditions take a toll on our relationships, especially those we depend on the most. Caregivers are thrust into roles they didn’t sign up for and sometimes forced beyond their limits. Those living with chronic pain or illness don’t want to be a burden but reach out in desperation, often disappointed when others can’t be there for them when they need it most.

Relationships can crack under the strain. But as my husband and I discovered through many challenging months and years, there are ways to make our relationships more supple and resilient. It starts with having realistic expectations of ourselves and others.

Care Tips for Givers

Know your own limits. Sometimes we can come in with a savior mentality, expecting to magically fix the other person. We quickly burn out when our loved one doesn’t improve and keeps needing more than we can offer. By naming what we can’t give or do, we pace ourselves to be a steady source of support, even if it’s not everything the other person needs.

Call in other family members, friends, and experts. “I can’t help you here, but maybe I can find someone who can,” is a good line to keep handy. When we take pressure off ourselves, we make space for others to step in. Sometimes others are hesitant to offer help because it appears that you’ve got it under control. They might just need to be asked. Sometimes you might find you or your loved one need expert intervention in the form of therapists, social workers, or spiritual leaders. It’s okay—and healthy—to ask for help.

Take care of yourself. A growing body of research shows that unpaid caregivers to those with chronic and debilitating conditions are themselves at risk. The stress of caregiving can manifest as increased susceptibility to cancer, heart disease, and infections; obesity and pain; and, most frequently, depression.

While other people’s needs may feel more urgent, we do no one favors by shorting our own needs or feeling guilty for taking care of ourselves.

[Read: “Yoga for Caregivers.”]

Talk about it. Caregivers often bear a silent burden because talking about our challenges feels like complaining. We need to be honest about our humanity, not in a self-pitying way, but in a way that lets others know they are not alone. Sharing our experiences as caregivers can destigmatize and normalize our struggles. It might even lead to broader changes that make our society more supportive of caregivers and care receivers alike.

Care Tips for Receivers

Adjust your expectations. One person is not going to meet all your needs, nor should they. When we take the pressure off our spouses, children, siblings, or best friends to be everything for us, we allow them to show up with the gifts they can offer. We give that relationship room to grow amid our changing health circumstances.

Be open to new sources of help. Sometimes it’s easier to let one or two people in on your health conditions and present a façade of being just fine to everyone else. In new social situations, we are often reluctant to share what we need and just suffer through, or simply don’t go out. But sharing our vulnerabilities and limits doesn’t have to be a burden. We can say, “I need a ride home,” or “I need to go to a quiet spot in the building to lay down,” as a way of showing up fully, without expecting our needs to be met in a certain way by a specific person. Being honest and open with our needs invites others into our “village” in surprising, often beautiful, new ways.

Know that you have your own gifts to offer. It’s a drag to always be on the receiving end. But even if we don’t meet society’s definitions of productive or valuable, we have something to offer, just by virtue of being human. Theologians of aging and disability share that care receivers call others into a sacred space of slowing down, noticing, and relating that is not about how much we do or how smart and successful we are.

Whether we are in this position for a season or a lifetime, we are never just receiving. We are weaving webs of interdependence and vulnerability and inviting others to be more present to our shared human condition. We all need each other. That awareness in itself will build resilience in our relationships and our communities.

Whether a giver or a receiver, read about bringing loving-kindness to caregiving.