Are You the Invisible Patient? |
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Millions of critical illness survivors leave U.S. hospitals to be cared for by their own informal system.
With little guidance, patients’ loved ones often assume overwhelming caregiving responsibilities.
These "co-survivors" need support to ensure positive medical outcomes and to address their own trauma.
by Jennifer Chap, BS and Patricia O'Gorman, Ph.D.
We all live interconnected in families, friendships, communities, within our own unique social systems. So, when tragedy happens to someone in our life, we feel it.
Whether you are a passerby who sees a neighbor collapse, calls 9-1-1, and begins CPR, a parent whose teenager is in the ER after a crash, or the partner of someone who is critically ill in the ICU, you are affected. You may feel shock, your heart racing as fear and uncertainty take hold. You are the “invisible patient” feeling alone and suffering in silence.
Immediately, you face many decisions about your responsibilities—children, work, pets—so you can be with your loved one.
Eventually, they will hopefully be discharged home, but that may be just a new beginning.
Once discharged, your loved one’s care falls to you to manage, support, and champion, while continuing to function in other areas of your life.
You are more than a caregiver
We often use the term “caregiver” for this new status, but “caregiver” does not go far enough. You and your loved one experienced the medical event from different perspectives. Your loved one is the survivor. And you are the co-survivor.
Co-survivor is a powerful new identifier that makes you visible to yourself and others. It empowers you to see your own trauma stemming from your loved one’s medical challenges. You may need support to stay healthy for yourself, your survivor, and the other loved ones in your life.
Finding your new normal
For many, the co-survivor job description looks something like this:
Care for surgical wounds
Schedule appointments, transport, and handle insurance
Lift, dress, shower, etc.
Problem-solve and encourage
This is daunting. But science-backed support models can guide your next steps in caring for your own needs so that you can care for your loved one.
Below are two support systems: one new, the other 75 years old. The development of both included people with lived experience.
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