The insights of people living with serious mental illness (SMI) in recovery can be invaluable to caregivers, but they are a largely untapped resource. Too often our insights are diminished, dismissed, and ignored. However, growing awareness and focus on mental illness is helping to recognize and harness the contributions of lived experience.
Peers with lived experience have relevant learnings and insights from facing challenges similar to those encountered by others with SMI. Sharing these perspectives can inspire hope, empower, and inform people with SMI to live a fuller life and reach recovery. But a team effort between the person with SMI and their caregivers, typically close family, can best address mental illness. This relationship can often be quite challenging, largely due to communication issues created by a lack of understanding on both parts. However, if the caregiver and loved one work well together, they can achieve better outcomes more quickly.
That has been my experience, as someone with severe bipolar I disorder, and that of my caregiver, my spouse. For too long, we were in conflict because we didn’t appreciate what the other thought and felt. When we finally learned to understand each other in our shared challenge, we were able to communicate and collaborate to accelerate my recovery.
We realized that there were few resources to help bridge the communication gaps between caregivers and loved ones. While there are peer-to-peer and family-to-family mental illness support programs, there are no peer-to-family approaches to our knowledge. That is why my new book, Loving Someone with a Serious Mental Illness, is written principally for caregivers. It shares the perspectives of someone with SMI and her caregiver to help caregivers communicate and collaborate with their own loved ones with SMI.
The Value of Others’ Lived Experience
Caregivers can gain potential benefits from the lived experience of peers who are managing their SMI constructively.
- Unlike caregivers and clinicians, peers managing SMI have firsthand lived experience of living with mental illness—how it impacts us, how we view it, and how it makes us feel.
- We have a unique lens on how loved ones with SMI view family, clinicians, and other participants in their care.
In addition, people with SMI can help caregivers better understand:
- How their loved one wants to be treated.
- Why their loved one behaves in certain ways, in effect helping to translate a loved one’s behaviors into their underlying motivations and causes.
- What their loved one may be feeling (e.g., fear, anger) at different points in the life cycle of their mental illness.
- What concerns their loved one may have.
How to Find Peers With SMI
Caregivers may not know how to find a person with SMI to access these benefits. Here are a few suggestions:
- Speak to family and friends and healthcare providers. It’s likely someone you know has mental illness or knows someone who does. Instead of merely seeking peer support from other caregivers, speak to people with SMI.
- Read first-person accounts in reputable academic publications such as Psychiatric Services and Schizophrenia Bulletin. Publications usually include contact information for authors who could be an additional resource.
- Consult books written by people with lived experience, including memoirs. If you like what you’ve read, google the author’s name and reach out.
- Search for coaches. Coaching by people living with mental illness can be hard to find, but you can search directories for listings.
- Seek out mental health advocates. They are often involved with local mental health nonprofits such as the National Alliance for Mental Illness, the Depression and Bipolar Association, and Mental Health America.
Most people with SMI are happy to share their insights. Many do so without compensation. However, the demonstrated benefits of peer support reflect an unmet need and significant opportunity to deliver these services. We need to create more fair-paying career opportunities for people living with SMI to help both people with SMI and their caregivers by sharing their lived experience. This would help cultivate and further professionalize lived experience and, in turn, increase access and enhance outcomes for people who need support.
Recovery can be a long, hard journey, and you and your loved one need all the help you can get. People with SMI can make valuable contributions to your loved one’s journey and help you along the way.
