Caregiving.  Most of the time, this word conjures images of grown children caring for aging parents, or seniors caring for seniors. Sometimes it brings to mind younger people caring for a loved one with cancer. One image most people don’t consider is caregivers for chronic conditions. We are unsung heroes.

It comes with mixed feelings. Our loved ones are dying… but slowly. Some can even be restored to “normal” with a transplant, if everything goes well. Others move through stages, gradual or abrupt, that require constant adjustment and flexibility. The traditional definition of a caregiver doesn’t always apply. In conversations, we may feel guilty about identifying as caregivers. But our role is long, arduous, and often misunderstood.

We are caregivers.

We navigate care. We become armchair experts, hyper-attuned to any nuanced change in our loved one. We move through endless lists of specialists. We get listed for transplant at this hospital, or that hospital — sometimes five different ones. We become disciplined and relentless in medication management, movement, emotional regulation, and advocacy. We live constantly on the razor’s edge between compassion and militancy to keep our person alive and thriving.

We are caregivers.

We need support, love, inclusion, respite, and care of ourselves. We deserve recognition for the work we do — even if we don’t seek it. We deserve community and safe spaces to connect with others, to talk or not talk about our experiences, and to remember what it feels like to be a full human being independent of caregiving.

I urge you to find spaces like this for yourself, so you can continue the fight.

Because:

WE ARE CAREGIVERS.