I had the amazing honor of being a guest on the #BCSM tweet chat a few days ago. Next week, this community celebrates four years of serving breast cancer survivors, their caregivers, and healthcare professionals. Our main topic was caregiving…something close to my heart.
While there are more than 65 million caregivers providing support to loved ones annually in the United States, they are what I call the invisible population. Sadly, this invisibility doesn’t show up in just one way. Within the healthcare system, caregivers often find themselves shut out.
Because we don’t fall under a billable code, there are very few, if any, resources for us. We are often relegated to a seat in the corner instead of being included as part of the patient’s team. Most of us have more influence with the patient than any healthcare professional, have the most at stake next to the patient, yet we are not given tools to better support our loved ones. We can also run into challenges with regard to access to information and medical changes.
Then there are the ways we treat ourselves as invisible. It is rare to find a caregiver who doesn’t consistently put their loved one first – over and over. Time, energy, financial resources, emotional support – it all goes to the patient. Even when we do find a little time or extra money to take care of ourselves, the opportunity can be tainted with guilt.
But we are headed into a caregiving crisis – and a disproportionate number of personal caregivers are women, many of whom also work outside of the home. To continue to show up and support those we care for, we must invest more in our own self-care.
And if this country is looking to create a financially stable future, we are going to need to invest in the wellbeing of caregivers. The implications and impact of even one-third becoming patients due to the physical and emotional toll are massive. #timeforchange
 The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC.