Photo by Brian Stanton

Every health challenge, small and large, takes a toll on the patient, the family, and the extended support system. The roles of patient and caregiver are decidedly different and hard to understand until you’ve been both. As a patient, having empathy for your primary caregivers is important. They are volunteering out of the goodness of their hearts and they often take on a lot—more than expected or what they were formally trained for. Caregiving may be completely new to them; how they handle it depends on their experience to date and how they are related to you. Your spouse’s approach, for example, might be completely different from your child’s or your sister’s or your closest friend’s. You might not even have someone you feel comfortable asking to take the lead role in your care. Some patients who live largely independently may find themselves at a loss when they suddenly need to rely on others and don’t have that individual already built into their lives. And it all walks a fine line. The caregiver-patient dynamic is just that—dynamic, ever-changing, and emotional.

On the one hand, caregivers may feel joy and pleasure in feeling needed, in knowing they are helping someone they care about deeply. On the other hand, however, there can be feelings of “no control”—of simply not understanding how to help, where to step in, and when. They can be fearful watching you struggle and praying they don’t lose you. They might want you to fight more, or less. Often, they quietly carry too much of the burden, which creates hidden anger and resentment. They may even suffer their own health struggles as a result of the added responsibilities and stress. Caregivers can prioritize the patient at their own expense.

As patients, the best thing we can do is communicate our needs clearly, often, and thoroughly. And show gratitude. As caregivers, the best thing we can do is speak up, and articulate our own needs as precisely as possible, because as much as we want to help the patient in our lives, we have our own needs, too. It’s okay—actually, it’s critical—that you admit when you’re reaching that maximal point of your own stress, your own worries, maybe your own health issues. Chances are that caregivers are rarely helping just one “patient.” They are often juggling a few people in their day-to-day lives, such as their own family members, including parents and children. Caregivers need care, too.