Finding Your Support

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Last night (October 2nd), we had our first ever “Broken and Mended” support group meeting.  Nine people attended the meeting in person and one joined through Zoom. It was a great first meeting.  Someone may not be immediately impressed with the number of participants, but I am encouraged because it is a great core group to build around.  Also, we have not even come close to maximizing our potential for promotion.  And finally, the smallness of the group helped others feel comfortable to share more genuinely.

I am not going to publish any particulars from our participants publicly.  While it was an open meeting, in that anyone could attend, there’s a certain culture of confidentiality that we want to create amongst those who do participate.  Not that long ago, I saw a guy on Twitter lamenting that he felt betrayed when some people he worked with used information he shared about his chronic illness on Facebook against him.  I don’t ever want that happening over something shared in one of our meetings.  What people say in our meetings is between them and the people they say it to in the group.  I’ll do my best to foster and maintain that expectation.

However, I do feel I can share some general observations about the meeting.  Over the last two years that I have contemplated beginning this ministry, I have often wondered how deep the need for such a group would be shared by others in chronic pain.  I had a lot of encouragement along the way that if I started such a group that many would gladly participate and benefit greatly from it.  But until I actually launched the group, how would  I know that others would feel the need as deeply as I have felt it?  

My biggest takeaway from last night is that people struggling with chronic pain really do need a group like we had last night.  Maybe not everyone needs it, but I think most of us do.  There were some expressions of emotion last night that impressed upon me the fact that years of suffering chronic pain leads to deeply pent-up emotions just waiting for an opportunity to vent to empathetic ears.  It was evident that some of our participants felt heard and affirmed in ways they rarely experience with their family, friends, and even with their doctors.

Some common themes emerged.  People in chronic pain struggle with believing that others really care about their pain and they certainly don’t believe most people can relate on an empathetic level.  People with chronic pain struggle with a sense of unworthiness directly connected to their sense of guilt due to believing they have become a burden to others.  And finally, people with chronic pain have struggled with their medical professionals in correctly diagnosing their maladies and/or in finding doctors who would believe them.

There are certainly more commonalities regarding those in chronic pain but these emerged as a near consensus in our small group last night.  And they underscored very vividly the need that we share for mutual support.  People were heard last night.  They were understood and that apparently doesn’t happen very often.

If you are someone who loves a person in chronic pain, but you don’t have that experience yourself, please don’t take what I conveyed about the wrong way.  People in chronic pain often feel isolated by their experiences and they know it isn’t your fault if you are unable to understand.  It is no different than if someone close to me loses their spouse.  I can tell them how sorry I am and really mean it, but I can’t genuinely tell them I understand their pain.  Only someone who has gone through that terrible experience can truly “get” them.  I have been reluctant to lead a grief group in my church–though I am convinced we need one–because I don’t have the needed (and, of course, unwanted) experience to lead such a group with empathy.

My point is that it may be that your loved one in chronic pain needs to have an opportunity to share their experiences with those who know to some degree what they are going through.  You can still be a tremendous support and companion to them on their journey, but part of that support may be at times admitting you don’t what they are going through, but that you love them anyway, and are there for them no matter what.

If you have chronic pain, visit this site often (right now there is a new blog at least once a week) and find our Facebook group: https://www.facebook.com/groups/brokenandmended/.  You can also e-mail me if you want to participate in a Broken and Mended meeting via Zoom at BrokenandMended18@gmail.comWe all need support on this difficult journey.

About David Heflin

I blog about topics related to the Christian faith and the struggle of chronic pain. I have ankylosing spondylitis and have dealt with chronic pain since 2011. I hope to provide support and community for those going along that same journey with me.
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