The Fellowship of Suffering
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I am well and truly blessed in this life. I have an amazing husband, wonderful children who love me, and a supportive family. I have a comfortable home, with two of the cutest dogs alive. We have nice cars that get us where we need to go, and we don't have to worry about them breaking down. We are adequately provided for, with extras that allow me to travel and see the world. I have so much more than so many in this world, and it makes me feel uncomfortable with expressing that I also have suffering in my life. But that is the absolute truth, and I think it's important to share it for many reasons.
Back in 2017 when I first began receiving my diagnoses, one of the first things I did was to learn about them. I signed up for webinars. I read books. And I joined Facebook groups. While I learned a lot from the webinars and books, I think what I really needed in this process was the Facebook groups. You see, I needed to get outside of the technical information and see what life was really like for other people experiencing the same problem. How did they deal with their symptoms? What new things had they learned that I could glean from? What challenges could I identify with and pray for for them, and what progress could I celebrate? I needed to know that I wasn't alone in these diseases (Lyme Disease and SIBO at that time) and that there were other people out there experiencing similar things and maybe even winning some battles against this stuff I had been told was permanent and potentially fatal.
A few years later, I added Ehlers-Danlos Syndrome (EDS) to my diagnoses. This time, I didn't waste a lot of time in the books, I went straight to the Facebook groups. I joined a group specific to the Pacific Northwest, but I also joined the EDS Zebra Memes group, cuz memes. Laughter is the best medicine after all! One of the most helpful things was reading people's blogs. They shared the day-to-day stuff of living with EDS, the things they learned, the challenges they faced. The problem is that living with a chronic illness means that life sometimes gets full enough that blogs drop in priority. Posts get further and further apart, and then they just stop. I couldn't find any regularly maintained EDS blogs by someone other than a major organization. That was one of my primary influences to begin the Salty Zebra blog.
Two more years later I received the news that I had a brain tumor. At that point they thought it was a sub ependymoma, which is pretty rare. I was able to find a few threads on Inspire, an online support group site, and a couple of blogs. Here's the disturbing bit, these blogs didn't drift off because people posted further and further apart, some of these blogs ended because their authors died. Now I began to feel like my story actually mattered and that my voice added to these few others might offer some companionship and support to others in my situation.
In 2022 I was deeply affected by being able to virtually attend the Global Learning Conference for the Ehlers-Danlos Society. Here I heard from hundreds of others who shared the same bizarre symptoms I did. They had similar experiences in their lives. They validated my whole past, everything that had been blown off. The whole "EDS thing" started to actually feel real to me. Then, last year, I actually got to participate in person! We flew to Philadelphia and sat in a room with hundreds of other people just like me! People using canes. People wearing braces. People in wheelchairs. People who were gluten free. People hungry to not be alone, to not be the only one who felt like they did. Sure, we learned a bit of new stuff about what was wrong with us and what to do and not to do, but I think the biggest part was the fellowship. Then, on my most recent cruise, a wonderful thing happened. I met someone who also has EDS and we became good friends! She gets all the EDS craziness, all the MCAS woes. I can share with her and it doesn't feel like complaining. We have certainly found fellowship in our suffering!
“It is a comfort to the unfortunate to have had companions in woe”
- Dominick de Gravina, 14th-century Italian historian
More simply put, misery loves company. When you are experiencing suffering, it is all too common to think that you are alone in it, like you are the only one who has ever been through this. But the truth is that, "What has been will be again, what has been done will be done again; there is nothing new under the sun." [Ecclesiastes 1:9 NIV]. While it's true that your particular combination of rare diseases might be difficult to find in another person, you will still have things in common with others who have each of them. Whatever your struggle, it's important to find your people!
Finding fellowship in your suffering might look like finding a Facebook group. It might look like finding a blog. It might mean engaging a therapist or joining a support group. Perhaps it's as simple as reaching out to those close to you and sharing what's going on. Whatever it is that you need, it's important to recognize it and pursue it. We were made to need and support each other. We also learn from Ecclesiastes that, "A person standing alone can be attacked and defeated, but two can stand back-to-back and conquer. Three are even better, for a triple-braided cord is not easily broken." Ecclesiastes 4:12 NLT.
But here's the most valuable insight into the fellowship of suffering - it is not just among people. Paul wrote in Philippians 3:10 (CSB) "My goal is to know him and the power of his resurrection and the fellowship of his sufferings, being conformed to his death." And then Peter shares in 1Peter 4:12-13 (NLT) "Dear friends, don't be surprised at the fiery trials you are going through, as if something strange were happening to you. Instead, be very glad--for these trials make you partners with Christ in his suffering, so that you will have the wonderful joy of seeing his glory when it is revealed to all the world." In our suffering, we are not alone. Through it we are drawn deeper into relationship with our Savior. We identify with Christ in His sufferings almost as a participant or companion. When we endure suffering both physically and spiritually, we experience the burdens and trials Christ experienced on earth rather than merely observing or sympathizing with them (1).
In Colossians 1:24 (NLT) Paul writes, "I am glad when I suffer for you in my body, for I am participating in the sufferings of Christ that continue for his body, the church." Our suffering matters. It has purpose and meaning. It draws us closer to Christ and He can use our suffering to speak to others. As we participate with Him in His suffering, we are bound to each other by a common experience. We can identify more deeply with Him and He with us, if that were possible. The type of suffering does not change this. Whether you are struggling with mental illness, loss of a job, physical pain, or a broken relationship, Jesus can identify with you in your suffering. Jesus experienced great sadness (John 11) and anguish (Luke 22:44). He felt alone (Matthew 27:46). He knew pain like few others (Mark 15:16-32). And betrayal (Luke 22:48) and broken relationships (John 6:66). I'm sure there are aspects of Christ's experience on earth that I am missing here, but His experience is also not limited to earth. Jesus created the earth and was present to its joys and trials ever since. He has been loved and hated, embraced and discarded. When we suffer in any way, we suffer with Him, we identify closer to Him.
Matthew 16:24 (NLT) Then Jesus said to his disciples, "If any of you wants to be my follower, you must turn from your selfish ways, take up your cross, and follow me." Like so many other times in Jesus' preaching, He is not describing a literal cross here. He is not telling each and every one of us to go make a wooden cross and carry it around with us wherever we go. Our cross, if I am understanding this correctly, is our suffering. It is the trials and challenges we will face in this life. We are not to avoid them or try to get around them, we are to take them up. We are to join Jesus in the fellowship of suffering. Why would He want us to do this? Well, we've already discussed how it draws us closer to Him and how it gives us a voice and connection in this world, but wait, there's more!
Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us. Romans 5:3-5 (NIV)
Here's the Thing: It seems counterintuitive, but suffering is actually good for us. Romans teaches us to glory in our sufferings! Other translations use the words: rejoice, celebrate, exult, boast and have joy. I don't know about you, but this isn't my first reaction when getting bad news. Maybe it should be though? Maybe someday, God will grow me to the point that when I hear I have some crazy, rare new diagnosis, I'll throw a party!
(1) Mitchell, R. (2024, July 8). What is the fellowship of His sufferings (Philippians 3:10)? Discovering Employment Paths and Travel Experiences. https://www.ncesc.com/what-is-the-fellowship-of-his-sufferings-philippians-310/
Someone Knows Your Pain: How Suffering Ties Us to Christ | Desiring God
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