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7 tips from a support group fan

Okay, I’ll admit it.  I’m a support group fan.  I think groups can do lots of things all rolled up in one place – support (of course) and hearing about resources you never knew were there.  But other things, too, like receiving high fives for getting through a tough school meeting or finding shortcuts to strategies you need.  Through it all, you know you aren’t alone.

So what’s the draw in this age of social media?  Online, we can congregate, stay in our sweats or PJs and never leave the house.  It has to be worth it to venture out.

I started out as a support group member.  My son was seven, having meltdowns three or four times each day and I was overwhelmed and fresh out of ideas. I was running to appointments, talking to the school every day.  Regular errands, like going to a grocery store were a surefire way to add in more fireworks, turning a half hour task into 90 minutes or more.  When I looked in the mirror I saw someone who was discouraged and depleted.  She needed help.

I had my own therapist, as did my sons, and they were great.  But they hadn’t lived what I was living.  They didn’t know the mixture of dread, fear, sadness, anger, guilt and exhaustion I lived through each day.  I went looking for someone like me.

I didn’t find her. Instead, I found another mother who was just as overwhelmed and depressed but had great ideas on how to fit in some mental health breaks during the day.  I found parents whose children had a range of special needs and they had a menu of strategies for success with their insurers and their schools.  I heard about books to read, movies to watch and experts to seek out.  I met people who reminded me to laugh. Evem better. they were all in one group. My knowledge increased and what’s more, I learned to see value in the little successes and try out new ideas – often ideas I hadn’t had myself.

We moved a year and a half later and it was brutal losing that group.

Not long after, someone asked, “Why don’t you start your own group?  You’ve been a group member,” she said.  “It will be a piece of cake.”  Not knowing what I was getting into, I said yes.

The first meeting seven people showed up.  They weren’t sure why they decided to come and I wasn’t sure what I could offer.  At the end of two hours we were laughing, sharing stories, eating food and rooting for each other.  We were all parents who had children with emotional and mental health issues, some with diagnoses, some without.  By the end of the second month, people were talking and meeting outside the group.  By the end of six months, they were going to hospital and school meetings with each other.  One mom broke her ankle just before Christmas and another went shopping with her, carrying bags she couldn’t manage on her crutches.  “It’s not even my holiday, the other mom told the group. “I’m Jewish.”

Every support group has a kind of individual chemistry and a lot of that comes from the facilitator.  If you are kind and compassionate, your support group will be too.  If you like rules, it will be orderly and if you like laughter, people will share their humor.  If you are curious, hopeful, determined, accepting and friendly, those qualities will show up.

Although we had a short list of group “rules” two were repeated often by group members.  They were, “what’s said in the group stays in the group” and “no blaming.”  A third rule – the group belongs to the group – was taken as a given.

One mom, Mary, would come to the group regularly with her husband.  She had a teenage son with bipolar disorder and told us he got it from her.  She felt so guilty, she said, that she passed on the bipolar.  Another group member put a stop to that.  “There is no blaming here, not even blaming yourself.”  Once Mary came and was frazzled, spoke rapidly and had difficulty staying still.  “I’m off my meds, she told us.  “I’m worried I might be pregnant and I don’t want to take a chance my psych meds could hurt a child.”  She couldn’t afford a pregnancy test until the next paycheck.  Another group member grabbed her car keys, ran to the local Walgreens and bought a test.  She and Mary disappeared, then came back with the results, which were negative.  Mary promised to start her meds again that night – she did – and group members called to be sure she was back on track.  She was supported and directed but never judged.

Tell me, can you do all that online?

Another member, Maureen, found a way to make us laugh no matter how dire things got in her life.  Her nine year old son had tried to jump out a classroom window.  Instead of agreeing that he needed special education, the school system moved his class to the first floor, so he wouldn’t have far to fall.  Her son also saw things that weren’t there.  One day, she told us, he ran to her and said there was a man in his room and the man was jumping on his bed.  “Honey, she responded, “I should be so lucky.”

I began a second group a few months later and both lasted for seven years, until I began a new job and couldn’t do it anymore.  It was even harder leaving those groups than it was my first one.  Each meeting was like watching a soap opera or a reality show and I would be drawn in, rooting for people, holding my breath at other times.  I was left wondering what happened next to everyone.  Occasionally, I would hear a snippet, get an email or connect with someone online.  Considering what they had braved, most everyone was doing pretty well.  They certainly deserved it.

I’ve thought a lot about what makes a group work, because when it does, there is nothing like it.  Here are my top 7 tips.

1.  Create a community, not a group. Groups have a set time, specific rules and guidelines.  While those are important, they don’t make a group successful.  When members feel like this is their community, things take off.   Communities are built on a sense of belonging, shared experiences and knowing what you can expect from each other.

2. Share the emotional connection. The members of the group will come looking for someone just like her, or him.  Like me, they won’t find it.  But their experiences will echo one another’s.  In one group, a mom described her son’s intense depression and how isolated he was.  “At least he doesn’t use drugs,” she said.  The next mom said, “My son uses,” and went on to describe his isolation and how it tore her heart.  They connected that night and sat next to one another for the next several meetings.

3. Emotional safety is essential. Parents live with chaos at home and frequent unpredictable behaviors. When a group has group rules, a lack of judgement, a commitment to honesty, clear boundaries around confidentiality, members can breathe.   Sometimes you don’t get all the rules right, though.  I was terrible at ending on time, often finishing a conversation in the parking lot.

4. The facilitator must have personal experience raising a child with emotional and mental health challenges. Some experience with support groups is pretty important, too, as facilitator training alone doesn’t do the trick.  Culture matters a lot as well especially when groups draw from communities that are diverse.  Remember, the facilitator is not the authority, but should be the catalyst for creating a community.

5. Foster networking and mutual support.  Parents often feel pretty alone.  They are like Atlas holding up the sky, not able to let go of the responsibility.  Groups work when the group doesn’t just support the members, but the members support one another.  I knew one group leader who did a lot of one-to-one work with parents.  When she formed a group, the members tried to continue their individual relationships with her, instead of forming new ones with each other.  It didn’t work out very well. Some group members will cook for the group, make calls, form carpools or even advocate for one another.  It’s their group so they know what works.

6. Continue to grow the group. Group members come and go, but if you’re lucky you have a mix of long time members and newer ones. It’s hard for parents to locate groups, so facilitators have to get creative when marketing.  I took a lot of calls from parents before they ever stepped into a meeting.  They’d say, “Do you think I’ll fit in?” “Do I have to talk?”  Facilitators have to reach out – often by phone – before meetings, afterward and in between.  Connection fosters community.

7. Nurture future leaders. When you run a group, everyone at the group watches you.  It can be unnerving at times, but this is how we all learn.  When someone offers good advice or brings in a new resource, sit back and smile.  They might be doing this too someday.  We’ll need them.

Redefining family

It’s been hard having to deal with a diagnosed mental health challenge for most of my life. Every day I have to be aware of where my emotions are heading, how low is “too low” and the difference between seriously wanting to die and just having a really bad day.  I have to have the recognition that, at least right now, one of the major reasons for my prolonged stability is taking the right combination of psychiatric medications consistently every day.  Having to deal with all of that, and adding a clear lack of family support on top of it, made my journey to my now-almost-four-years of stability a much harder place to get to.

Growing up in a big family, a relatively happy person in a relatively safe small town, family was important to me. Being adopted, I already knew family didn’t have to be blood-related, but as far as I was concerned being part of a family, even an adoptive one, meant that we all looked out for each other. And that even if we had challenges or conflicts, that family was family and you never turned your back on them.

That all changed when I hit an all-time low in my mental health journey when I was 19. I’d been hospitalized off and on about six times before that over a three year period, but I was always able to change a medication, continue therapy, and get back to my life in the community. That year, though, I was hospitalized 13 times, had been admitted to and decided to quit my partial-hospital program twice, and had switched therapists multiple times. On top of all of that, all of a sudden, the little emotional support from my family that I had been receiving was taken away.

I was in the lowest emotional spot I’d been in my life, and now even my family couldn’t stand being around me anymore. In this particular circumstance, I was told by my parent during an inpatient hospitalization, during a three minute phone call, that I would not be welcome to come back home after I got out, leaving me effectively homeless. This one phone call extended that admission for over a month due to my increased suicidality and hopelessness.

Four years later, I have learned some valuable lessons about family through the few rough years that followed that phone call. I’ve learned that family is however you want to define it, and whomever you want to include in that definition. It doesn’t have to be blood-related, or a legal bond, like adoption. It can be whomever you feel is your family.

For me, I now have a self-made family that is my most important support system. It’s made up of close friends from all walks of life who I have chosen to become my family. They’re the adult supporters who cheered me on when I became homeless and supported my decisions in my mental healthy journey. They knew that I was capable of more and stood by my side to help me achieve it. They’re former clinicians who went above and beyond their job descriptions and to this day maintain a connection with me. And they are peers from all walks of life and age groups who sat by my side and heard my lamentations and knew where I was coming from because they’ve experienced challenges too. Peers who would validate my situation, but also wouldn’t let me drown in the despair because they knew all too well the dangers of dwelling too long in the deep end.

I think one of the hardest lessons I’ve had to learn for my own mental well-being is the recognition that even if people are supposed to be family, it is unrealistic to expect support when  that person is not capable of being that supportive person for you. And for me, in my individual journey, that recognition also meant forgiving those people for past hurts, and not holding on to those negative feelings within myself and letting it taint my interactions with them today.

Because for me personally, if I’m still letting those past hurts inform my present, then I’m still being held back from being the best version of myself that I can be. And me not becoming the best version of myself isn’t something I’m willing to risk.

Dani is a 24 year old college student and mental health advocate living with bipolar disorder.  She enjoys writing poetry and singing, as well as being the proud parent of 2 adorable felines.