Secrets of a Long-Standing Support Group
(For example, a MVPS/Dysautonomia support group)
Providing Empathy for the Sympathetically (& Para-sympathetically) Challenged
When you're suffering unusual sensations, scared what it may mean, and medical professionals are evasive, dismissive or just plain stumped, there is intense relief and hope in the moment you find that first person who says, “You are not imagining it. I have that, too. There are ways to cope, there are multiple management and treatment strategies.”
People remember that moment, that human connection, that relief, even if they can't yet retain new information. New resolve for survival appears in that moment, new energy for for exploring the diagnosis and personal stressors that trigger symptoms. A bit of calm comes over a desperate feeling situation, one desperate enough for seeking explanation outside a medical setting, seeking explanation why the medical profession hasn't been offered the help you expected.
Vividly, I remember how important my first supportive encounters were. Eventually, I became the leader for two groups, ensuring their service continued. I couldn't bear the thought of these two groups disappearing when their leaders wanted to move on. So grateful to those who took my calls, I couldn't bear there being no one to answer new calls, no one to offer support and direction.
Both of the groups involve people with dysautonomia symptoms, and both have survived for more than 10 years. Because of my own and everyone's stress sensitivity, I kept informal, low maintenance, but with occasional times of increased activity. Offering support is sometimes wearing, but more often I reap deep emotional and intellectual rewards. Leaders learn about the best and worst in health professionals, treatments, and patient coping styles. The trick is then to apply it to yourself.
Support contacts and groups for MVPS/D have been dwindling. We need more open connections to real people willing to listen some and share a little, to give out a few resource numbers. It can be by phone or email only, at meetings, or all with a website thrown in, too. The dysautonomia community in particular needs more voice-to-voice and face-to-face connection because there is such a low level of recognition and knowledge in the medical professions.
To inspire more people to sign up as support contacts or to form new groups, here are some of my hard earned secrets for simplicity and sustainability.
Low or no attendance is OK.
People feel better knowing there is a group to go to, even when they rarely show up. In the past, I got frustrated when no one showed up, felt people were taking advantage of the group and my efforts. Now, I realize the no show meeting has its own kind of service. It is still comforting to those who don't need a meeting that day, but feel less stressed because one exists and it is an opportunity for me to read or do something for my healing. Instead of being upset, I invest the gift of time and quiet for sustaining me.
With two to four attendees, some of the best and more in-depth conversations take place. We more easily get into delicate subjects, such as how symptoms might be affecting families, work, sexuality. Each attendee has more time to share, gets more personal attention.
When a bigger crowd shows up for another meeting, when back to sharing and caring as a group, I am reminded how the variety of meeting size kept me learning and adapting, helped me get to know the people with MVPS/D better.
Notice how special this all is.
Every MVPS group, every phone support person with MVPS is so important. Every person with MVPS is special, has something unique and valuable to contribute to others with it. We're not in this alone, we have much experience to offer each other.
While there is greater access to information via computer and more internet support available with forums and email lists, nothing will replace voice-to-voice or face-to-face contact and community. Live interaction where you hear inflections and/or see body language in real time, with understanding and accepting feedback which also may include some practical tips, that's truly special.
Long term group members teach coping just by taking care of themselves in front of others. They might get up an walk around often to aid circulation and calm a fast heart rate; frequently sip water and have high sodium and magnesium snacks, such as roasted almonds; lie on the floor on days where their blood pressure is feeling inadequate; rest their heads that feel heavy on the table for awhile; always keep their feet up to save energy, reduce symptoms; show you support hose can be fashionable. They may also talk waving their hands to prevent the numbness that sometimes comes when arms left dangling at sides.
People will probably exhibit symptoms you have and didn't realize were related – a need to fidget, frequent trips to bathroom, trouble finding words, blurting out ideas as they come instead of waiting for a break in the conversation, trouble finding a comfortable temperature with a sweater worn only half on or being put on and taken off again and again. You may witness super sensitivity to unexpected sounds and smells, and people's trains of thought easily derailing.
Every MVPS story is special and has components that someone else needs to hear. I love the magical connections that occur near the very end of meetings, when something is shared that was too hard to say at first or that was assumed no one else would want to hear. It is usually followed by a chorus involving "Me, too. Wow. I thought I was the only one."
Make it simple, make it last.
Many groups, just like people, suffer when they over plan, overdo. Instead of immediately giving yourself the work such as collecting dues, writing and sending out newsletters, offer only the basics for a time. Add in a little more only as you are comfortable, having a plan to easily scale back in case of your own symptoms worsening. Keep yourself going by do less, avoiding being overwhelmed. Choose activities you'd get the most enjoyment from.
People with dysautonomia need information and that basic human connection. You don't have to create the information, just point people to it. Encourage subscriptions to the Society for MVPS newsletter, visits to various websites, mention a few books, then focus on where, and how often a group could meet, if and what hours you want to make yourself available by phone.
Keeping a meeting location and dates predictable makes publicity so much easier. E.g. The 2nd Tues. of every month. Send one local newspaper your event notice occasionally. List your contact information with the Society for MVPS and mvpsupport.com.
The most important thing is to stay available over time, and have a few ways for people to find you as often or as infrequently as they need to. Some only call me once every three years and that's fine.
Whether it be at monthly or quarterly meetings or answering the phone one day a week, we need more people ready to share and support. Everything else is a bonus, from having speakers or showing a dysautonomia DVD, to doing more advertising, to typing up a member list or distributing articles. Just to inform about the existence of a DVD, that there books are available on MVPS is a wonderful service.
While it would be enough to only give the Society for MVPS phone number, a one page handout with contact information is a good place to also list books, videos, and symptoms. Such a list can be a great conversation starter during meeting lulls. Use the back for a map to meetings.
Passion for your own self care and a similar passion for helping others live their best lives given what is happening to them is fundamental to long term survival of support contacts. You don't have to be the expert, but with a little practice you can learn to expertly guide people to resources they need. And, a simple and flexible support system may make it easier to find someone to take over the group when the time comes for you to move on.
Its no secret...
Offering support lines helps callers, but the ones offering support get a healing boost, too. We get to know about the best doctors and other practitioners, we get to hear everyone's best strategies.
It sometimes seems silly to get involved with a group in which everyone is likely to have anxiety, panic, and interesting heart sensations, when you are having symptoms yourself. But watching carefully how others react provides great insight how you might want to cope more like or less like the people you meet. Practice and patience get you through dealing with difficult people, and you'll make enough great new and understanding friends to make up for hard times.
I've received countless "You've helped me more than all of my doctors combined" and “You saved my life!" comments. You know what? Everyone who has ever contacted me is playing a role in saving my life, too. Thank you.
Northern Virginia MVPS/D & OI Support Group
Northern Virginia CFS/ME, FMS & OI Support Group
Yahoo Group MVPS-D_OI_NOVA
Elly's Gratitude Group for People with CFS, FMS, OI