How can I use my use my caregiver story to build better lives for the millions of Americans affected by mental illness?
The experiences you have had as a caregiver - loving someone affected by mental illness, navigating a complex mental healthcare system, trying to find effective resources and support in your community - have certainly come with some important lessons.
A lot of caregivers want to share these lessons, along with the challenges and hardships they have faced, so that other families have an easier time getting the mental health and caregiving support that they need.
Below, you will find several ideas for sharing your caregiver story to help people affected by mental illness and their families.
Getting Involved
One rewarding way to use your story for positive change is to get involved with mental health organizations like NAMI. Your local NAMI Affiliate and NAMI State Organization may host events where you can meet other caregivers, share tips you’ve learned throughout your caregiving journey, and encourage them to seek the help and support they deserve.
Family caregivers can also train as NAMI Family Support Group leaders, Family-to-Family Education Program instructors, or leaders of other NAMI signature programs to educate people about mental illness and help them connect with one another over shared caregiving experiences. Visit NAMI’s Support & Education webpage to learn more about NAMI Signature Programs you may wish to become involved with at your local NAMI Affiliate.
Some volunteer caregivers partner with local NAMI Affiliates and NAMI State Organizations to share their stories at mental health events and conferences. This helps attendees like policymakers, law enforcement officers, and educators learn firsthand about what it’s like care for someone who lives with a mental illness. Caregiver stories are a powerful way to spread the word about what actions, policies, and programs could help improve the lives of people with mental illness and their families.
Locate the contact information for your NAMI State Organization and closest NAMI Affiliate using the Find Your Local NAMI webpage. Be sure to visit their website or call them directly to learn about upcoming events and volunteer opportunities.
Legislative Advocacy
Policy change is often spurred by a powerful retelling of someone's experiences. You can share your caregiver story with lawmakers to expose challenges within the mental healthcare system and promote policies and programs that would be or would have been helpful to you and your family. Here are a few ways to get started with legislative advocacy as a caregiver:
NAMI Advocacy
Consider participating in a NAMI Smarts for Advocacy workshop. NAMI Smarts for Advocacy is a skill-building training that helps people with mental illness and their caregivers turn their passion and lived experience into powerful stories they can use to advocate for policy change. After participating in a NAMI Smarts workshop, you will understand how to share your story with lawmakers in a way that encourages positive change. Connect with your local NAMI Affiliate to ask about participating in a NAMI Smarts workshop.
You can also sign up for action alerts about policies and initiatives that could affect people with mental health conditions through NAMI's Advocacy Action Center (Quorum). Using your story as a powerful advocacy tool, you can respond to action alerts by contacting your state and federal representatives to argue for policies and programs that support the well-being of families impacted by mental illness.
Finally, participating in a NAMI Education Course or Support Group at your local NAMI Affiliate may introduce you to other people interested in mental health advocacy. You can partner with them on actions like attending a city council meeting or writing an Op Ed for your local newspaper to spread the word about important events and initiatives related to mental health in your area.
Other Caregiver Advocacy
The Caregiver Action Network hosts a Caregivers-In-Action Insights Panel, which is a volunteer network of family caregiver advocates dedicated to representing and amplifying the voices of the 90 million family caregivers from across the United States. You can learn more about the Caregivers-In-Action Insights Panel and share your caregiver story on their Caregiver Story webpage.
The Family Caregiver Alliance has a Advocacy Tips for Family Caregivers webpage that outlines steps family caregivers can take to encourage change at the public policy level. It also lists a number of other advocacy organizations you may be interested in exploring.
Hours of operation: Monday-Friday, 10 a.m. – 10 p.m. EST
Call: 800-950-NAMI (6264)
Text: 62640
Email: helpline@nami.org
Website: www.nami.org/help