What to expect at your first support group meeting
Six tips for finding the right support group for you
My first support group experience was not successful. Honestly, it was a complete nightmare for all involved. After my husband’s diagnosis with Parkinson's disease, friends, family members, and his physician all recommended us to entrench ourselves in a support group. I didn’t know much about them as I had never gone to therapy or attended a support event outside of close friends and mom chats.
So, I did what I seem to do best. I jumped in both naively and rashly. The stereotype was right in our case, men aren’t necessarily comfortable with sharing their feelings. For us being faced with a diagnosis, we went into action plan mode. If someone recommended something, we tackled it. If the doctor suggested something it went to the top action spot on the list. We were looking at everything we did - from our diets and food choices to our exercise routines. From reducing stress to planning our finances. Everything was on the table for a change.
"I felt vulnerable and exposed but came to understand that support groups are just that a ‘group’ of collective souls coming together to share."
I urged we start this process right away, with no time like the present. A social worker provided a list of support groups by proximity to our home. I thought this was great because he had limited time as he was still working 70 plus hours a week and we had a young child that too demanded attention. He paused, I felt his graceful hesitancy and said well, “I think it’s best if you go first and if you like it, then, I will go.” I was the litmus test. In reflection, he was stalling and was uncomfortable in not only what the diagnosis meant for him but discussing it outwardly.
Taking charge, I agreed. How bad could it be? I was looking for any way to help us through the diagnosis. What I didn’t know was what I wanted from the support group. Did I want a feeling of belonging? Did I want a safe place to share? Did I want a thoughtful conversation about life, both the disease and pre-diagnosis? Did I want to learn coping strategies? I just knew it was on the list of things to do so... I went.
As I pulled into the parking lot, I felt a bit of anxiety about what to expect. I entered a room of people mingling, chatting, and exchanging pleasantries. Everyone greeted me, even if it was just a wave of acknowledgment or a formal "hello." The moderator then signaled us to take our seats and that the meeting was beginning. I felt a shift in the seriousness of the room.
Sharing began and the conversation around acceptance of the diagnosis ensued. I sat silently absorbing every word, shift of tone, and several members' tales. Chronicles of dreams changed, jobs lost, marriages broken, feelings of isolation. I am not sure what exactly was said but suddenly, I felt like I needed water and I was finding it difficult to get air. I could sense my face getting red and then it happened, a tear swelled in my eye. I tried oh so hard to quickly brush it away before it could roll down my cheek but then another, and then another followed. I kept telling myself to stop and pull myself together but the more that I sat there and tried to stifle my ugly cry, the more it came out. I knew I wasn’t sobbing about what was being said exactly. I was crying because it was a realization of where we were and entering into a new life; it was a first glimpse at the road ahead. The moderator thankfully took a break and I decided I would take a break as well. As fast as I could I headed towards my car to drive away and instead I sat there and continued to sob. The room I left helped me face what was going on at home, a new reality as well.
The following day I received an email that in essence asked me not to come back. I remember it saying something like it might not be the right fit for me...
I felt as though I had been stabbed in the heart.
I felt vulnerable and exposed but came to understand that support groups are just that a ‘group’ of collective souls coming together to share. It wasn’t the right place for me at the time. In hindsight, this was an established group that had long surpassed the feelings and emotions I was just starting to grapple with. Realizing as well that support groups aren’t a catch-all and this group was more for the individual with the diagnoses and not the caregiver. My husband and I joked about this for years after. He relished in the fact that he knew to send me first to test the waters. We both eventually found support groups individually that served our needs. We were most grateful for the collective feelings of belonging, connectivity, experience, awareness, and empowerment.
Recommendations to find the support group for you:
Be selfish! What do you hope to gain? Learn? It is important to ask yourself why you want to go and what you’d like to learn or gain. Leveling your expectations will help you decide if a group is the right group for you. Some groups are more formal and centered around experts talking and sharing while others are more informal and centered around friendships, escapism, and shared stories. All are good options and your needs may change over time. Try to be open-minded about what can help you.
Check with the group first to see some of the touch points that are important for fitting in. Email the moderator and see if you connect. Ask questions such as, is this a mixed-gender group? Is it for both the caregiver and the care recipient? I know many people who like to go together. They share as a group and then split into breakout sessions. What’s the median age? What’s the structure? Is there time to get to know one another? How are the speakers chosen? How long has the group been together? This is helpful to know how deep some of the existing relationships are and if you would feel comfortable sharing.
Don’t choose just because of the location. The pandemic has opened the doors for a more virtual way of supporting each other. Be in search of need first and then narrow in on logistics and transportation. One of my favorite support groups has always been online. Facebook has many groups that are private and protective of your safe space, but they join many like-minded individuals from different locations. It’s refreshing to hear from all around, options, resources, thoughts, and solidarity. One of the value adds I find from these groups is a thumbs up, a heart, or a comment that I am understood, I hear you, and I support you, from strangers in a physical sense but not in a relatable sense.
Don’t be afraid to try again if it wasn’t the perfect fit or you don’t feel like you and your journey fit in the long term. Keep searching and look for something new! Life is too short, and caregivers often have limited time to indulge themselves, so move on and keep searching for the safe space you can grow in.
As challenging as it might be, be yourself because it opens you up to vulnerability. Be as authentic as you can. Sharing real-life challenges, fears and stories is key to you getting the most out of the group. It's quite normal to have emotions and to share them... Even if you cry! You will get to the core of your needs the more you are honest about yourself.
Until you can find a place that feels right for you and your situation, find alternative ways to connect that aren’t as formal. Lean on a friend. Have virtual coffee chats. Share with family members. Chat with a neighbor. Look for a therapist. Explore options with a social worker. The key is not isolating yourself.