Elisa Friedlander
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Elisa Friedlander

I feel your pain: The power of witness in group support

11/22/2015

6 Comments

 
People have a deeply innate desire to be seen. I'm not talking about Facebook selfie type visibility, I mean really be seen. To have people, or even that one person, be tuned-in to your joy, struggle or other experience. To simply be present without trying to fix you. When somebody bears witness to a piece of my story, we've established a connection and those shared moments become a part of me. I have received a valuable gift. 

To be witness to the story of another is also powerful. Even though deep down we want people to see who we are, we might be conflicted about that. It can feel vulnerable, uncomfortable or even unsafe for some. When somebody allows me to see them, I know I am the recipient of trust. It's a pretty big honor to be in that position.

This give and take makes for an ideal dynamic in intimate relationships. Even when we are fortunate enough to have it, though, sometimes we need more. We need to be witnessed by people who know first hand what it's like to be in our situation. That's where group support comes in. It's not meant to be better or worse, or a more or less profound experience. It's about being seen in another, important way.

After being diagnosed with a progressive neuroinflammatory condition called CRPS (complex regional pain syndrome), I wanted to meet others who understood this specific pain and its tremendous life impact. I searched for support groups but found none within a reasonable vicinity. I was not willing to be without it, so I started one of my own.


We gather each month and focus on a specific topic. When the conversation veers to something other than what we planned, the energy it ignites serves as useful information. There is strong desire to connect with others about the newly raised issue. Most often, we agree to revisit it another month when we can expand the dialogue.

Along with the discussions, the group itself is always evolving, and I love how welcoming and even excited current participants are when new people come to check it out. Each person offers what many friends, sadly, no longer do when medical issues enter the picture. They show up. We come together because of our shared experience, but our group is not only about pain. By listening without judgment, we also bear witness to one another's strides, resilience and hope.

I get far too much credit for starting and keeping the group running. The truth is, it was not a selfless act on my part that propelled me to get it going. Yes, I wanted to contribute to this community somehow, and this felt like a natural fit for me, but it was more than that. I needed to, or I would continue to be the only one I knew who understood this type of burning nerve pain. I wanted a space where others were game for talking about issues related to our rare condition in a forward-moving way. I needed these people whom I had not yet met.
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When I worked with parents of children who are Deaf and hard-of-hearing, I encouraged group support as an adjunct to our psychotherapy sessions. Hearing from me that their kids could be independent and live happy lives wasn't enough. They needed to meet parents of older children to be directly exposed to that truth. For the majority, the group experience increased their ability to go further in individual therapy. Both systems of support offered a unique experience of witness that met different needs.

I have also had opportunity to lead many support groups. But at my monthly CRPS gathering, I am a participant. Sure, I facilitate, but being a gentle guide, offering up topic ideas or sending out information is only part of a much bigger picture. Having this group in which I'm not looked upon as the professional means I am in the company of my peers. I can open up and be seen.

Like the others, I wake up some days and pain informs me that I can't make it. I might be in the midst of a major flair-up or recovering from a recent emergency room visit. I might feel exhausted from too many nights without sleep. Getting through the car ride, much less interacting with people, seems questionable. Yet I go, and people who know about the hardest part of my life start walking in. I am instantly comforted, and the feeling continues long after our time together.

I consider the group to be an integral part of my pain management plan. It doesn't stop the hurting or help me regain mobility, but it's high on my list of things that renew me, which is a key element of the coping process. Few things compare to the power of witness. There's not a selfie I could post that could give me that feeling of being seen. 

6 Comments
Sandra Gordon
11/23/2015 08:36:22 pm

You expressed what you are so well what you are living with and others who have CRPS may be experiencing. It makes periods of joy and having a good time with out the pain seem too few, that could bring you down, if you let it. I wish I had your talent to be able to write so explicitly about what I am feeling. You are blessed. How can I, and anyone else who wants to help, push the Medical Community do more research than has taken place so far? It seems that too much time has passed with so little knowledge available to help all who are suffering in pain without knowing the cause. "We are what we eat." What foods should be avoided that increases pain and swelling? Is that issue discussed in your group and with the doctors working on CRPS? Are there Websites that are shared with all who need to know what has helped others? I hope you and the others who need to know, can connect with those who are working on cures.
Good luck!

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Elisa Friedlander link
11/24/2015 07:37:44 pm

Hi Sandy, Thank you for being such a great advocate! Although this site is intended for people who are impacted by any type of pain or disability, I'm of course happy to respond to your questions /comments about CRPS. There is actually a lot happening in terms of helping those of us with this painful disorder. Two national organizations, RSDSA and RSD Hope work tirelessly for individuals and loved ones in areas such as research, advocacy and support. RSDSA is in ongoing collaboration with leading experts, so no stone is being unturned. Last year the FDA recognized CRPS as a "Rare Disease" - so that means federal funding is now being driven toward finding relief. In terms of sharing information, there are online support groups where we connect with hundreds of people… it is invaluable.
It is my experience that people who suffer from any type of pain do an incredible amount to help themselves. Most of us are up on the very latest research/information at all times and are highly educated about what our bodies need. Unfortunately, there is no "quick fix" and while attention to food is important for everybody to manage and prevent medical problems, the vast complexities extend far beyond the "we are what we eat" mantra.
Thank you so much for asking what you can do… one thing is raise awareness (spread this information around as much as you can) and another is to make donations to one or both of the above organizations at rsds.org and rsdhope.org Happy Thanksgiving!

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Noelle Manning
11/24/2015 06:35:13 am

You are an angel!! I am so very grateful for you!!!! During my darkest time I found your crps support group...Yes we meet once a month, but the connection I feel with everyone in the group is something I hold close to my heart. Your smile and your laugh are contagious.The group has become an essential part of.my life.

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Elisa Friedlander link
11/24/2015 07:48:24 pm

Thank you, Noelle - just being with the group makes me smile. It's nice to see your name here- I am grateful for you too! I hope that other people who need support find a place they can go to have this type of experience. Have a wonderful Thanksgiving!

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Dave S.
12/3/2015 10:26:37 pm

Elisa:

As another of your fearless followers into the life-giving support your group has offered, I wanted to express just how much it means that you do show up each month to help gently guide us into and through the varied, important, deeply necessary, and always smile-inducing discussions. Finding you and your group has pulled me from a despair that I had thought I had long ago dispatched.

The camaraderie of others dealing with the same kinds of issues can make an immense difference to the lives of those who are both newly diagnosed, as well as for those who've persevered for too many years. To clarify, I think I thought I had moved past this stage of my disease. And perhaps, I had. For a time. But, what I'm really trying to say is that this group - your group, our group - is for every one of us, regardless of how long we've dealt with CRPS. To be seen, now, finally, after so many years, is a pure joy for my heart. And despite the energies expended to show up each month... the toll it takes on the days to follow... the preparation needed during the days before... it pays off so many times over.

I hope that your blog, and the comments generated by those who read your blog, will prime someone who thought they didn't need this special kind of personal interaction - a group support - to stop by, just once. I'm sure they will find the group to be helpful in ways they could never imagine.

Keep the articles coming, Elisa! You're doing beautiful work here.

Thank you for everything that you do. And thank you to every single one of you who has visited our group... even once. Each of you has taught me something. I only hope I can reciprocate.

Reply
Elisa Friedlander
12/4/2015 06:29:54 pm

Thank you Dave, you expressed this so beautifully! You made many important points. The need for support is not based on what stage of illness (or grief or any other reason people seek various types of support groups). The energy it takes to get there... and how we choose to go (when we physically can) despite the "price" we might pay. And yes! - I hope this encourages people to try out any group. And Dave, you give and reciprocate so much more than you know.

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