Does a Support Group Stigmatize You?

I had heard recently that a friend didn’t want to be identified with our group because she didn’t want chronic pain to become her identity. I take no offense, because, first of all, this friend is one of my greatest supporters in everything I do. Second, this group is here for those who need it. I never imagined it would be for everyone with chronic pain. But Broken and Mended is not just a blog. We are a ministry and there are many ways to connect with us. Her hesitation relates directly to joining a support group.

The implication is that joining a support group stigmatizes you or, at least, labels you. Even if that is true–which I will contest momentarily–it is still another large leap to say that joining a support group will form your identity around the purpose of the group (in this case, chronic pain). In the meetings themselves, we have strongly debunked the idea that our identity should be based on chronic pain. I’ve also touched on the issue in a video blog here and I wrote on the purpose of a support group here.

The idea that joining a group for support stigmatizes you is perpetuated by a society that continues to elevate self-sufficiency as one of its favorite idols. We all need help in some way. Some need it more than others due to extenuating circumstances. That doesn’t mean that participation in a group created for those in similar circumstances creates a personal identity equal to the group identity.

What I mean is that, of course, a group has a particular identity. And when we participate in such a group, we absorb some small aspect of that group into us, but we also give some part of who we are to the group.

Let me tell you a little about me that has nothing to do with my participation (even my creation of!) in a support group. I am naturally shy and self-conscious. Sometimes I think God put me in ministry so I wouldn’t completely retreat into myself. I am an avid Houston sports fan. I love to read and to contemplate big ideas. I am a family man who loves his wife and kids and extended family. I can work hard for long periods of time and do absolutely nothing for long periods of time. Oh, and I happen to struggle with chronic pain and started a support group, in part, to help combat the loneliness that comes with that.

My struggles do not make me who I am, but they are part of who I am. All of who I am belongs to Christ. He is my identity! And whatever segment of society that wants to attribute my entire identity to one aspect of who I am (because society loves to label people!), that is their problem and not mine.

What I want to say to you is that if the reason you have not given us a try is because you thought that somehow being involved would claim your entire identity, that couldn’t be further from the truth. One of the main reasons I am doing what I am doing with Broken and Mended is to help people see that they are so much much than their illness! When you hurt all the time, you can start to believe that your identity and pain are the same thing. But it isn’t true, and Broken and Mended will never tell you otherwise!

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Chronic Pain Hot Links — 3/8/19

I haven’t done a hot links post in a while. So some of these links might not be so hot anymore! Hot links gives the impression that you are clicking on something timely. “Get ’em while they’re hot!” Maybe I need a different name for this kind of post, but one thing I realize is that good information or encouragement for those with chronic pain doesn’t expire. So, maybe they are still “hot” links after all! Without further ado:

This one is deep and very worth the read. The author deals with a lot of issues in coming to terms with her body and with others and her faith in the midst of chronic pain: http://chreader.org/alone-in-my-body/

Esther Smith will be our guest speaker for the support group meeting on April 2nd. She also keeps a great blog full of valuable resources. In this post, Esther discusses a recent anxiety group she oversaw and provides some helpful links/resources for dealing with anxiety: https://www.lifeinslowmotionblog.com/a-few-more-thoughts-on-anxiety/

Here’s a story of several testimonies about their difficult of staying on needed opioid meds due to prescription regulations: https://www.statnews.com/2016/07/15/chronic-pain-opioids-patients/?utm_content=buffer3c447&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Sometimes half-truths given through out of context Bible verses do more harm than good. Here’s a good and personal story about keeping the tension that exists between the God who heals and the reality of death until the coming of Christ: https://www.rzim.org/read/a-slice-of-infinity/sharing-life-and-death

That’s all for now!

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Children and Chronic Illness

Image result for children and chronic illness
Photo Credit: Getty Images/iStockphoto

I am still trying to find effective ways to conduct an outreach to adults in chronic pain. I don’t even know where to begin when it comes to children and chronic illness. Perhaps this is the best way to begin…to acknowledge the children and their families who daily wrestle with their child’s health.

It is my hope one day to have an entire wing of the Broken and Mended ministry to offer support to the families in this predicament. When everyone else is posting pictures of their child’s latest accomplishment, these parents are reporting on their child’s latest hospital visit. We could all do with a little more awareness and sympathy for those who are in this struggle.

My oldest son was born with acid reflux. What is an aggravating annoyance for adults can be a full-blown horror for a baby. Our son cried at the top of his lungs for 8-10 hours every day. I know the hours because our pediatrician had us keep a log on how much our infant was crying.

I would come home from work and my wife would drop off my screaming son in my arms and retreat to some place in the house where she could finally cry. It was AWFUL!

He grew out of it by the time he was six months old. His overall health was never in jeopardy, and yet I can tell you that those are still probably the most difficult days of our now 17 year-old marriage not to mention our 15 year-old son’s life. I am glad he has no memory of it.

I share that story not because it somehow makes me think I can relate to those of you who have a child with a serious chronic illness. I share it to demonstrate that I can’t even imagine what you are going through. If it was that hard to go through that with our infant son for a few months, how much harder is it for those of you whose child will carry their illness through every phase of their childhood?

I want you to know that I care. I want you to know that I know you are going through a very special battle. Those of us who live with pain as an adult would gladly take it over the prospect of our children suffering. In fact, one of the scary things about my disease is how genetically based it is. It doesn’t mean my children will get ankylosing spondylitis, but they definitely have a greater chance of doing so.

You would trade places with your child if you could. As it is, you have to watch them suffer, and then you suffer as only a parent can. The suffering of children is one of the hardest realities to square with our faith in God. I certainly don’t have all the answers as to why children suffer, or more personally, why your child suffers, but I do know that God cares and loves your child even more than you do.

If anything, my hope is that this post reminds you that are not alone. One day we may be able to have Broken and Mended support groups for people just like you and your family. Until that day, please know that we care!

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Do You Want to Get Well?

What does Jesus mean when he asks the crippled man, “Do you want to get well?” and what does it mean to those of us in chronic pain? NOTE: Video references John 15, but I meant to say John 5:1-15.
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Truth in the Opioid Crisis

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Photo Credit: https://tincture.io/the-opioid-crisis-time-for-a-change-27de0c2af5c6

It wasn’t screaming “look at me” but I was pretty sure I saw it. I went back and read the words again. Yep, there it was. It was a classic case of a “strawman argument.” A contested idea was stated followed by an obvious statement that no one is contesting. The intended effect was to prove the contested statement by forcing agreement with the obvious.

When I subscribed to Arthritis Today, I had hoped it would be a safe place to experience reading articles that would either prove to be practical or, at least, empathetic. Maybe I could read other stories that reminded me of my own.

What I did not want to find was another source for spreading misinformation about the opioid crisis. If that subject was discussed I had hoped it would represent both sides of the discussion: those pushing greater restrictions on opioid access and those negatively impacted by less access to opioids. To be sure, I won’t judge the magazine by this one slip up, but this one certainly got my bias detection antenna going.

The quote was from Seoyoung Kim, MD, and professor, “But many studies found no benefit of using opioids chronically in non-cancer pain. No single pain killer can get rid of chronic pain completely.”

Did you catch it? The first sentence is certainly not universally accepted. If there are “many studies” that find no benefit of the chronic use of opioids in pain patients, then might there be other studies that show the opposite. Certainly, I know many sincere people who struggle with chronic pain who would contest that statement on anecdotal grounds. Is their perspective to be dismissed?

The second sentence in the quote is a statement that no one is making, especially by those in chronic pain. Most people do not take opioids to “get rid of chronic pain completely,” but to reduce their pain to a manageable level. If they are denied access to these medicines, they may soon find their life unbearable. But don’t they know, “Many studies found no benefit of using opioids chronically…”?

I apologize for the sarcasm. I am just honestly turned off by this kind of dishonest argumentation. A woman commented on another post this week that she hates anytime that she needs her prescribed opioids. She isn’t taking them because she wants to, but because she has to.

But if you want to know why the misleading rhetoric upsets me, it is because of the life and death consequences of taking pain meds away from those who need them. Read this article about what happened to Jay Lawerance. From that same article, here’s a different perspective from another MD, a perspective that needs to be heard:

“We have a terrible problem. We have people committing suicide for no other reason than being forced to stop opioids, pain medication, for chronic pain,” said Thomas Kline, a North Carolina family doctor and former Harvard Medical School program administrator.

“It’s mass hysteria, a witch hunt. It’s one of the worst health care crises in our history,” said Kline, who has 26,000 Twitter followers, and a website where he publishes the names of those who he said committed suicide after having their opioids cut back or eliminated. “There are five to seven million people being tortured on purpose.”

As the rest of that article makes clear, this is a complicated issue. It is also clear that some of the complications result from misunderstandings of the CDC guidelines or overly cautious doctors, who are afraid of getting into trouble. There needs to be honest dialogue about these issues. Straw man arguments help no one.

From a Christian perspective, opioids are not evil. They may be quite literally a godsend when used in the right situations. Abuse of any drug is harmful, but the vast majority of chronic pain patients that have opioid prescriptions are not drug abusers. They need those drugs so they don’t want to kill themselves. Let that sink in.  

Except for the grace of God, there go I.

 

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Leaving the Judgment Seat for the Ash Heap

The post below is from a Wednesday night devotional I gave recently at our church. Because it was the same day that I wrote my last blog post, similar thoughts were on my mind when I wrote the devotional. It isn’t really part two, but it is a related entry into this blog. You might say it deals more generally with being a friend to those who are hurting and does not focus only on chronic pain. I hope it is an encouragement to you!

1/30/19 – Wednesday Night Devotional

I’ve been reading through Job as part of my preparation for this current sermon series.  But since the series focuses on Job’s questions, we don’t get to deal much with his friends, other than noticing when their insensitivity causes him to ask even more despairing questions. Job isn’t the happiest of topics, but I think it is a vitally important book.  I also read C.S. Lewis’ book A Grief Observed, today.  It took me about an hour.  I tell you that because it is well worth your time, but it is a little like Job; it is painfully honest.  I was also working on a blog today for my chronic pain support ministry.  The post was directed toward those who support those in chronic pain.  So, all this to say, that pain and grief have been on my mind, not the cheeriest subjects, but practically I want to say something today about what makes a good friend and what doesn’t to those who are suffering. 

Job’s friends do him no good in his misery after the first seven days.  When they begin to talk, they push him closer to the edge of despair.  They might be the original inspiration for the phrase, “With friends like you, who needs enemies.”  But it too easy to paint them as bad friends and pretend that we are not just like them in some ways.  They weren’t actually bad friends in some important ways. 

First of all, they came to Job in his need.  Many “friends” would avoid Job at all costs.  But they interrupted their busy lives and they traveled to Job.  Apparently, they were willing to leave their families and concerns behind to be with Job indefinitely.  They sit with him a week before they say anything of substance.  Most of us would get impatient with silence after ten minutes. 

When they speak, they make two horrible errors.  One is an instinct gone awry.  The other is caused by bad theology.  The instinct is to want to fix someone.  They see Job in horrible suffering.  They cannot just let that be.  They think they can fix Job with their good advice.  They lose the perspective of the ash heap and instead now assume the perspective of a benevolent judge.  We know what is wrong, Job, and if you will but listen to us, all will be well.  Their quest to fix Job becomes more important than Job himself. 

Their bad theology comes from the prevailing thought of the day.  If something terrible has happened to you, then it can only be because you deserved it.  They think Job is hiding a big secret and that if he would only come clean, then God would restore his fortunes.  They are so convinced of this that they can consider no other options.  Their fix-it instinct combined with bad theology leads to alienating Job and almost does what losing everything and suffering terrible pain could not do…sever Job’s relationship with God. 

I’m sure no one here has ever made one of these errors!  I had a good friend

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who grieved the loss of his dog like it was his child.  Even allowing for the fact that he had no children, I felt like the pity party had gone on long enough.  So, I wrote him a long e-mail about how his affections were misplaced and revealed he really loved his dog more than God, or something to that effect!  I was trying to fix him.  I was presumptuous with what I thought I knew about his relationship with God relative to his dog.  I was wrong. 

We are better friends from the ash heap instead of the judgment seat.  Jesus left the judgment seat for a cross and told his friends, “Greater love has no one than this: to lay down one’s life for one’s friends” (Jn. 15:13).  Job’s friends started out that way but lost their way.  Let’s be a friend to those who are hurting that resembles Jesus more than Job’s friends. 

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Loving Those in Chronic Pain

My ministry normally focuses on saying an encouraging, faith-building word (hopefully) to those struggling with chronic pain. I don’t often address those outside that circle, but I want to do so today. My intended audience, today, are those of you who love someone in chronic pain. There are a few things I want to say to you that hopefully will be beneficial to all involved.

First of all, we (those of us dealing with chronic pain) are not different than you. Everyone has pain in life and pain comes in many forms. Do forgive us if sometimes our “you can’t possibly understand” attitude comes off as elitist, as if we belong in a special category of suffering. Pain, of all kinds, is always deeply personal and no good comes out of trying to “one-up” each other over the kind of pain we are dealing with, like two old war veterans dueling by showing off old battle scars!

However, something profound has happened to those of us in chronic pain. We eventually lose our sense of remembering what it was like to not be in pain. I think this is what we aim to express when we saying something like, “You don’t understand what I am going through.” That sentiment is born out of the frustration of how difficult it is to relate what we really feel, not just the sensation of constant pain, but the nearly inexpressible ways that our fight with pain has impacted everything else.

Also, please forgive us when we inadvertently diminish your pain. When your back hurts, it isn’t somehow lessened because mine has hurt every day for the last few years. I mean that sincerely. If anything, I should be growing in empathy for any kind of suffering of those close to me. It is a knee-jerk reaction, that my first thought is about myself when I hear about your pain instead of showing concern for you. I noticed that the “we” fell out of my writing in this paragraph and the “I” became prominent. I know I cannot speak for all those with chronic pain when discussing my failings, but I have a suspicion that most fellow spoonies can relate.

Job on the ash heap

We do love those who share this painful journey with us. Truthfully, we couldn’t do it without you. I do hope you will believe us when we tell you we are hurting. It is by nature hard to tell people that you love “no” and a burden to disappoint others. So, please know that when we tell you that we can’t do something that we have measured that decision before we declared it.

And above all, please do not try to fix us by encouraging us to be mentally tougher, or trying the latest remedy you read on the internet, or heard from your hair stylist. There is no magic cure for those who are chronically ill. We have spent countless hours with doctors and other medical professionals trying to get our lives as manageable as possible. We probably have tried various diets (and some may have helped). We have learned how to be resourceful and seek out information that we need. You are very, very unlikely to possess the key to our better health, no matter how well giving up diet sodas worked out for Aunt Suzie.

We don’t need to be fixed, but we do need your love and support. We need you to believe us and listen to us. Every once in a while, we may just need to vent or cry a bit about how difficult our life has become. If you want to help, join us on the ash heap and cry with us a while. We won’t stay in that state forever. We know how to pick up ourselves up and carry on. We’ve been doing it for a while now.

Sometimes this is all we need to know!

We love you and we want to support you. We need your love and support. If we never had to deal with chronic pain, that would still be true. It isn’t truer because of chronic pain, but we may be more aware of the need we have for each other. And in that, there may be a blessing. Let’s be sure we don’t waste it!

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