Social media gets a bad rap, and sometimes, it’s deserved. But I’ve found within Facebook something I never expected: a community that provides much-needed support delivered in a platform that removes many of the barriers that exist with traditional, face-to-face support groups.
Like anyone who loves and cares for someone with a serious mental illness, the kind of support I find myself needing would ideally come in some sort of intravenous tube, a steady drip of information, resources, understanding, empathy, solutions, help and proof that my husband and I are not alone as we navigate what has become the most challenging, all-consuming reality of our lives. As parents to an adult child with mental illness, we find ourselves grappling to help him build a life for himself that has meaning, purpose and dignity, while moving forward with our own lives as well.
To say that his illness has profoundly shaped how we function as a couple and a family would be an understatement that no clever meme could capture. His diagnosis was certainly not what any of us, including him, had in mind. And because of the stigma still associated with mental illness, it’s not exactly Facebook fodder.
Cocktails parties, holiday gatherings with families, and yes, even Facebook are forums that welcome surface chatter, and even mention of life-threatening physical diseases like cancer or serious injuries usually elicits casseroles, prayer chains and inquiries for updates. Not so, with mental illness. That makes people uncomfortable. As a result, the millions of people who have mental illness and those of us who support them have been “unfriended” in countless ways. Like any other marginalized group, we find ourselves seeking one another out for safe harbor.
I stumbled onto a private Facebook group that was formed specifically for families of people who have the same condition my child has. This was after attending a traditional support group that I found well-intentioned, but lacking in practicality and depth for what we really need. Here are the reasons why private social media support groups often work well for people who are caregivers for loved ones with mental illness:
They are simply more convenient. As helpful as I found it to be in a room with other people who were also hanging on for dear life, making the commitment to get there every week was a challenge. I work full time and my husband travels a lot for his job, so getting there in the evening after work put me in the uncomfortable position of leaving our son at home for an additional three hours by himself. While I knew that getting help for myself was a good thing, it was hard for me to participate without being wildly distracted by what was being left untended. I kept my phone right with me, and fielded numerous texts and calls. Sometimes, the guilt was enough to keep me from going at all because I didn’t have coverage at home. With the private Facebook group, I can sign on whenever I like 24/7, and I can do it from my home without compromising my responsibility as a caregiver. I sometimes check in during lunch break, early in the morning with my cup of coffee, and even when I’m wide awake in the middle of the night. This kind of convenience makes it attractive for my husband as well, which has really helped him feel connected and supported.
I can get support when I really need it the most. Sometimes the timing of the traditional support group didn’t match the need. My group met on Monday nights. But sometimes I would be having a pretty darn good Monday, all things considered. Then I would go to the group and leave depressed and hopeless because I’d just spent three hours diving back into the black hole again. With the private Facebook support group, if things are good, I can allow myself a break. And when things aren’t so good, I can hop right on, getting and giving help in real time.
I can get the kind of help I need. Participants of the Facebook group ask one another about medicine, therapists, managing situations at home, family dynamics, legal issues, respite care, symptoms, you name it. People post articles about new research, recommend books and even share hopeful updates about our loved ones. You can follow the threads and chime in on the things that are relevant, and also check out when the conversation isn’t compelling at the moment. This is not possible with a traditional support group. If someone goes off topic, you have to sit there and politely listen, all the while feeling frustrated that time is being wasted. That might sound like a low bar, but for caregivers, time is liquid gold.
Someone really is minding the store. Like any social media platform, including private groups, the likelihood that rude or insensitive people will pop up does exist. But I think because we’re all pretty stressed out and tired, AND we’ve developed a level of empathy born out of sheer necessity, participants in this private group don’t accept rude behavior. If something gets out of hand, it’s reported to the administrator, who gently reminds everyone of the purpose of the group and the rules. The rare bully that crops up in these threads usually leaves, changes tone or is blocked after repeated offenses if that is needed.
The opportunity to support others just seems easier. I find myself chiming in much more frequently in the private chat group than I might in a traditional support group. Talking too frequently in-person earns you a reputation as a dominant, difficult participant, but the private group liberates me to help people online in a way that seems natural. If someone asks a question about a medicine or other treatment we’ve tried, I share what I know. I also find myself encouraging newcomers, validating feelings of frustration, encouraging people to be good to themselves, telling people they aren’t alone and celebrating small victories when people share them. And really, that’s what a support group should do, right?
For many, a traditional support group really does fit the bill, so I would encourage anyone to give one a try if it’s feasible. But it’s nice to know that there is an alternative.
About the Author
Anne Heinrich is Vice President of Development for Mental Health America of Eastern Missouri. She has worked in communications and the nonprofit sector for over 30 years. She and her husband, Bret, live in the St. Louis area, and have three children.