Editor’s Note: This post was written and submitted to us by Jon Scheinman, and originally shared on LinkedIn. To see the article in its original format, please click here.

I recently hurt my wrist while adjusting Livy in her wheelchair. It was a small movement, one I’ve done thousands of times. But this time something pulled, and now I’m wearing a temporary wrist brace.

It’s not the first injury. I’ve hurt my shoulders working out with her. I’ve hurt my back lifting her. My wife lives with chronic pain from years of lifting, positioning, transferring, and supporting Livy.

And we’re not alone. Many caregivers bear the physical scars of the caregiving journey.

But the weight we carry isn’t just physical.

It’s the weight of waiting. Waiting in doctor’s offices. Waiting for prescriptions to be filled. Waiting for insurance approvals. Waiting for insurance appeals. Waiting for equipment. Waiting for answers. Waiting for new treatments. Waiting for help that should not take as long as it does.

Caregiving is a life of constant motion and constant waiting, both at the same time.

For my family, it’s the weight of tens of thousands of past seizures and the impact that has had. It’s also the weight of the seizures that are still to come, knowing that Livy is a part of the 1/3 of people with epilepsy that are not fully controlled with current medications.

And then there’s the weight of what we lose.

There are things we can no longer do because the risk to our bodies is too great. Years ago, I tore my ACL playing soccer. I had surgery and recovered; however, I’ve never played again. Not because I don’t want to, but because I can’t risk being unable to help Livy for a month during recovery from another injury. That’s the kind of calculation caregivers make every day.

We give up hobbies. We give up playing sports. We give up relationships. Many give up their careers. We give up parts of ourselves not out of regret, but out of necessity.

We keep going because someone we love depends on us.
We keep going even when our bodies tell us to stop.

Caregivers are strong, but not unbreakable. We push through pain, but not without cost. We show up every day, but often while hurting ourselves. We pay a significant long-term cost to our health which often comes with the weight of increased medical bills.

It is well documented that caregivers have more significant health challenges than average including chronic illness, physical injury, depression and anxiety, social isolation, and more.

And yet, even with the injuries, the strain, the exhaustion, and the weight of everything we carry, there is something deeper that keeps us moving:
Love. Commitment. Purpose. And the belief that our efforts matter.

So the next time you speak to a caregiver, keep in mind that there is a person carrying more weight than you can see.
#CaregiverPerspective #CaregiverJourney #Epilepsy #Resilience #Hope