Facing Holiday Grief as a Chronic Illness Caregiver

The holiday season can be bittersweet for many chronic illness caregivers. While the world celebrates, you may be experiencing grief for the life you and your family once had, traditions that no longer fit, and your loved one's health challenges. If this resonates, you’re not alone. When life looks different from what it used to, this season often brings an ache for what has changed and what can no longer be. Here are some ways to help you face your grief during the holidays:

1) Name what you’re feeling – ambiguous loss You may be feeling irritable, a heaviness, immense sadness, or a dull heartache. You are likely experiencing ambiguous loss, a unique type of grief where your loved one is alive, but altered due to uncertain circumstances such as a debilitating chronic illness. It manifests as a profound sense of loss despite the person still being alive. With ambiguous loss, you may feel a mix of emotions at the same time, such as sadness, anger, love, frustration, guilt, and hope. For example, a caregiver may feel deep love for the person they are caring for while also mourning the loss of the future they imagined.

Simply recognizing, “This is grief” or “This is ambiguous loss,” can bring a bit of relief. Identifying and naming the experience as "ambiguous loss" can be a powerful first step to validation and beginning to process it. (See the “Navigating Ambiguous Loss in Chronic Illness Caregiving” blog post for steps on the journey towards healing.)

2) Adjust how you stay connected If attending holiday events isn’t doable, choose low-effort alternatives: a brief video call, sending a quick photo, or a simple message to say you’re thinking of someone. You can still stay connected in a way that honors your current realities. So maybe instead of attending a family holiday gathering for a full day, go for just an hour so it’s more manageable. With my husband’s family, I’ve suggested a holiday Zoom call since an in-person get-together is not possible due to long distances and everyone’s inability to travel.  Maybe you can text a simple “thinking of you” message to your closest friends when you don’t have the emotional bandwidth for long conversations. These small touchpoints can keep your relationships warm.

3) Loosen old expectations and modify them for your new circumstances Illness changes the landscape of the holidays. Trying to recreate past traditions can sometimes add more pain than comfort. Letting yourself simplify — shorter visits, fewer plans, or skipping something altogether — isn’t a failure. It’s an act of care for you and your household. So maybe instead of going to watch a live performance of “The Nutcracker,” you watch a movie version at home instead. Or instead of traveling to see family over the holidays, you create your own family tradition at home. Maybe if your loved one is bedbound and can't spend time in the living room with the Christmas tree, you can decorate his or her room.

4) Create bite-sized moments of connection If large gatherings or full celebrations aren’t possible, small rituals can still bring warmth. Light a candle. Share one memory. Watch a single favorite scene from a beloved movie. A few gentle minutes of connection can mean more than a whole day of “pushing through.” In my family, we’ve celebrated Christmas by unwrapping gifts over a few days when my husband’s health was at a low point. When my kids were young, I enjoyed filling the space under the Christmas tree with several boxes for them to unwrap, even if they were simple pleasures like their favorite snacks or sugary treats I usually won’t buy (like Pop-Tarts!). However, sometimes my husband didn’t have the stamina to watch them unwrap gifts unless it was done in 3-4 spurts with a few hours of rest in between. I realized that made the gift unwrapping fun last longer and allowed us to savor it more.  

5) Make space for your own feelings Caregivers often become emotional anchors for everyone else, including the person they love. Give yourself permission to step back and tend to your own heart — even if it’s just a few minutes to journal, shed a quiet tear, or sit with your breath. You deserve that tenderness too. Maybe this means you intentionally carve out 5-10 minutes to write in your journal, letting your sadness land on the page and be released from your system, instead of carrying this heaviness throughout your day.

Maybe this means realizing you’re having an emotionally difficult time, and making a conscious effort to take some slow, deep belly breaths every morning to help strengthen your resilience. This simple restorative act can help you feel more grounded instead of staying in overwhelm.

6) Let others support you in small ways  When someone says, “Let me know how I can help,” offer one concrete thing. A grocery pickup. A side dish. Gift wrapping. An hour of sitting with your loved one so you can rest. These small supports can lighten your load more than you might expect. See the blog post on “25 Ways to Support Family Caregivers” for ideas you can suggest to your family or friends. Remember that when you ask someone for help, you are offering them the gift of making them feel good about helping someone. People often want to help, but don’t know how (or maybe are feeling overwhelmed with their own lives). If you give them a few easy ideas, it may help them see how they can offer small but meaningful ways to support you.

7) Protect your emotional boundaries It’s okay to decline invitations, avoid draining conversations, or step away early. You don’t need permission to care for your own emotional bandwidth. Maybe this means you can redirect a well-meaning relative who keeps giving unsolicited health advice for your loved one, but doesn’t really understand what ME/CFS or Long COVID is. (Before going to a family holiday gathering, you may want to prepare for discussions about your loved one’s health condition by reading the “How to Explain ME/CFS or Long COVID to Others” blog post.) Remember, setting boundaries is healthy and can prevent emotional overload during an already tender season. You may want to think ahead of time about what your boundaries will be for certain social situations.

8) Seek spaces where you don’t have to explain Connecting with people who “get it” can be deeply relieving. A support group, an online space, therapy, or talking to a caregiving coach can offer room to share without needing to justify or educate. If you’d like to attend Caregiver Wisdom’s free monthly caregiver wellness circle and support group meeting, sign up for the email newsletter to get notifications and other caregiver support resources. 

Remember, the holidays may look different now, but they can still hold meaning, connection, and care. As you move through this holiday season, be gentle with yourself. There is no "right" way to grieve, and there is no perfect way to celebrate the holidays when life has been reshaped by chronic illness. What matters most is that you honor where you and your family are right now. Your grief is valid, your adjustments are necessary, and your well-being matters deeply. Know that you are doing enough simply by showing up for yourself and your loved ones with compassion. Note: You may want to read the "Avoid Stress & Embrace Joy as a Caregiver" blog post for six practical strategies and more than two dozen tactics to avoid holiday stress and embrace joy.