Why Do We Keep Calling Family Caregivers "Invisible"?

We're the face of our caree's quality of life. Why do they keep calling us "invisible?"

During a conference I attended last week, a leader of one of our national caregiving organizations described family caregivers as “invisible.”

This leader looked at an audience of about 1,000, many of whom are family caregivers, and called us “invisible.” He did not get that he was speaking to an audience of current and former family caregivers.

He did not see us.

This really bothers me. (It’s also another way our national leaders fail the Leader Test.)

I understand that family caregivers often describe feeling invisible within the health care system. This is definitely a reality. (Read: They See Us; Our Work Just Overwhelms Them.)

But, we are not invisible. We are impactful, profound advocates for our carees and ourselves. We work through Six Caregiving Stages and manage and navigate 19 Caregiving Systems.

For many of us, our caregiving experiences span decades. For all of us, our caregiving experience becomes a pivotal life experience.

My caregiving role was one of the most visible in my life. I was right there — speaking up and speaking out all the time to ensure my parents received the best care possible.

I was very visible.

Calling us invisible diminishes our role. It takes away our power.

We are overwhelmed and over-burdened by the systems that take too much from us and give very little back. We fight every day for better outcomes for our carees and ourselves.

This is the message we need to spread: We are the outspoken advocates that ensure quality of life for ourselves and our carees. We are the experts in our own caregiving experiences. We oversee, manage and provide care 365 days a year. Every day is Monday for us. We are very much the visible force that makes us the largest group of health care providers in the world.

It’s impossible to be invisible and do the work we do.

We need to focus on how much value we deliver without receiving the help, support and reimbursement we deserve. We need to remind everyone that they see us every day and everywhere. We are integral, imperative contributors in our communities, workplaces, health care systems and families.

See us? We’re making it happen. That’s why we need programs, services, supports and reimbursement to keep making it happen.

We need our national leaders to step up to show us and our work. Words matter. The wrong words make our work harder. The right words get us closer to solutions.

We need a leader in our space who sees that family caregivers are everywhere, especially right in front of him.

(Image by Gerd Altmann from Pixabay.)

Resources

• Our Virtual Caregiving Advocacy Conference takes place May 15-17. During our virtual event, we'll empower you with insights and strategies you can use to support family caregivers in your community and online. We'll tell you about what we've learned from our work with family caregivers so you can bring our lessons learned into your work. Because we best help others when we first help ourselves, we'll also share ways for you to heal your own experiences. Registration is free. You can earn CEUs on May 15 and 16 for a flat fee of $30.