All in the Family Newsletter
A Caregiver’s Mental Illness Recovery Journey
By Izzy Goncalves
My wife has bipolar disorder. I have been her supporter and caregiver for over fifteen years. For much of that time, communication issues caused us to lack understanding for how the other person felt. These are common challenges for families affected by mental illness. If supporters and their loved ones work together, the possibilities of recovery can greatly improve. I would like to share some of my experience and observations as a caregiver in this journey.
My wife was able to achieve recovery when we changed our attitudes towards each other and her condition. My wife and I finally discovered that we had a shared mission which centered on her reaching recovery. We became partners in her treatment. She had to take ownership of her condition, which I had to allow and encourage. I had to stay very involved, but not control her treatment now that she was prepared to take control. I also had to focus on taking care of myself which supporters often neglect when caring for their loved one.
Our experience inspired my wife to create ForLikeMinds, with my support. ForLikeMinds is an online community that helps supporters and their loved ones affected by mental illness find support, inspiration, and information from each other. We didn’t want families affected by mental illness to struggle needlessly when there are so many people with relevant shared experiences who can help each other.
Our Story in Print
We were also thrilled to share our story in bpHope, the leading publication for people affected by bipolar disorder. We hope that you can find some hope and useful examples from the experiences we share in the article.
A Typical Day in the Life of a Mental Illness Supporter Can Look Like This…
I’ve been there. I understand what you may experience as a caregiver — around the clock, from ups to downs. It is very comforting for supporters to know that others are having similar experiences and can relate. It can be empowering for supporters to engage with people who overcame or are successfully coping with the challenges of mental illness. ForLikeMinds tries to facilitate connections that reveal these shared experiences to people with mental illness and supporters. It can also be very helpful for people living with mental illness to know how their families might be feeling.
Recovery Based in Peer Support and Family Support
As I have shared in my personal statement video, my wife has struggled with severe bipolar I disorder for over fifteen years. She shares her story in her own Recovery Journey video. I have been her primary caregiver and provide her with as much support as I can — in treatment, monitoring for triggers and symptoms, coping with stress, setting goals, and developing her platform. Peer support and family support allowed my wife to overcome stigma and take ownership of her condition. They became the foundation of her recovery journey and, in turn, her online peer support community.
As my wife stepped out of isolation, she reengaged with her community. She joined The National Alliance on Mental Illness (NAMI) as a part of her recovery journey. NAMI is the country’s leading mental health non-profit and the leading organization that recognizes the importance of a family approach to recovery. Her involvement with NAMI began as a Peer-to-Peer and Family-to-Family class participant. She eventually became a Board Member of NAMI’s New York City affiliate (NAMI-NYC). I’ve been moved by how warmly NAMI-NYC has accepted my spouse and her engagement with its mental health initiatives. Over the past six months, she’s also been sharing her lived experience with the broader NAMI community as a monthly contributor to the NAMI blog. She has recognized NAMI’s tremendous impact through its mental health peer support, education, and advocacy programs, particularly its Family-to-Family peer support programs. Her involvement with NAMI has reinforced her commitment to a family approach to mental illness recovery.
As my wife developed ForLikeMinds, she has also viewed it as a complement to in-person support groups, such as NAMI’s wonderful programs. Online peer support can be a very valuable and accessible form of peer support. It serves as a useful entry point, bridge, and supplement to in-person peer support.
ForLikeMinds was Built for Supporters
We knew from the very beginning that ForLikeMinds had to be for people living with mental illness and their supporters. ForLikeMinds is the only online destination for supporters of people living with mental illness. We are highly attuned to the role and experiences of supporters. On ForLikeMinds, supporters can connect with other supporters in similar circumstances. For example, a parent of a child with bipolar disorder can connect with other parents of children with bipolar. Supporters can anonymously connect one-on-one and in groups, based on the mental health or substance use condition of their loved one in addition to optional demographic attributes. They can both join and create groups intended for supporters in similar circumstances. Mental health and other health organizations, community groups, in-person support groups, student groups, employers, insurers, and other organizations can create groups for their own members. Any NAMI affiliate may create a password protected group for the members of its affiliate. Supporters can also connect with people living with mental illness, which can provide valuable insights.
ForLikeMinds is free to use and takes only five minutes to sign up and five minutes to create a group. Since launching in October 2018, thousands of members joined our platform, and a significant percentage of them are supporters. People have identified with over 100 conditions, 40 substance issues, and 150 stressful life events. See link to watch a brief video that shows you how to use and get the most out of the platform. You can also learn more about us in our Explanatory Article.
We strongly believe that the greatest contribution we can make to people living with mental illness is to help bring families closer together. We hope you’ll make ForLikeMinds your online destination for connecting with other families caring for loved ones.
The Family Peer Support Evidence
NAMI’s Family-to-Family program well demonstrates the effectiveness of family peer support. It is included in the National Registry of Evidence-Based Mental Health Programs. To survey the current research on the importance of family-to-family peer support, we worked with Professor Larry Davidson, Yale University, School of Medicine, the leading mental health recovery scholar. He provided an overview of available research on the topic at the link below.
According to Professor Davidson’s research, several studies have investigated the impact or effectiveness of peer support on families dealing with a mental health issues. For instance, one study suggested that family peer support helped parents caring for children with behavioral difficulties: (1) experience improved family relationships and happier families, (2) become more empathic and accepting of others, (3) develop greater confidence and knowledge, (4) experience a sense of achievement, and (5) recognize possibilities for new opportunities, including ways of helping other parents.
Sharing Our Lived Experience in Many Ways
We are sharing our lived experience in many ways and forms, spreading our message of hope that recovery is real.
My wife’s Recovery Journey video.
My wife’s Talking About Mental Illness video.
My wife’s blog has links to over 30 articles she has written, published in leading mental health publications. She is a monthly contributor to the NAMI National Blog. She was also honored to have her first-person account “Stigma, Meet Hope” published in a leading academic peer reviewed journal, Schizophrenia Bulletin.
Our Collaborative Care Plan helps families develop treatment partnerships.
Our Treatment Survey helps families evaluate their loved one’s treatment.
Psych Ward Greeting Cards is a program my wife created to make it easy for empathic and compassionate people to let patients in the psych ward know that people, even strangers, care about them and support them. ForLikeMinds created and manages this program to deliver greeting cards from strangers to psychiatric patients at participating hospitals. Katherine shares her story with psychiatric patients during these visits.
Mental Illness Greeting Cards is my wife’s creation that helps people share a little hope with people living with mental illness and their loved ones and help them connect with each other. Top 10 designs have received over 2,500,000 impressions and sparked thousands of discussions on Facebook.
Peersights is my wife’s mental illness peer support mentorship service. It uses lived experience to help people living with mental illness and their supporters. With personalized help, supporters can enhance their understanding of what their loved one is experiencing and how best to help them.
My wife’s shop called RecoveryBoosters is a thoughtful depression gift shop for supporters of people living with mental illness. It offers gifts inspired by those my wife’s mother would send to her when she was deeply depressed. Each gift includes a personal note from my wife.
ForLikeMinds has just gotten started. As we grow, we will work hard to add features and services to meet our members’ needs. We want ForLikeMinds to help you best address the challenges of mental illness as someone with mental illness or a supporter. To help us, we would like your feedback. We would appreciate if you could complete the brief survey at the link below so that we can continue to improve and help you. Thank you for your participation.
Keep up-to-date With Our Work
To keep up-to-date with our work and for daily doses of inspiration, insights, and information for people living with mental illness and their supporters, please follow us on our Facebook community of over 10,000. Below is what you’ve missed.
Please Join Us
Please join us on ForLikeMinds to share experiences, insights, and hope. There are countless families with similar experiences. There is no reason for people with mental illness and their supporters to experience mental illness alone. We look forward to welcoming you on ForLikeMinds.
Thank you very much for taking the time to read our newsletter. We hope you’ve enjoyed it.
From our family to yours,
We Are LikeMinds