Interviews with Chronic Pain Warriors #2
I know! It’s strange to write these words [light and momentary] when talking about chronic pain. I have been in an R.A. flair most of the last year and have arrived at the place where I wonder just how much more I can take. Not that I want to end it all, but when I look at my young life and then look forward to my future, it’s hard to see a light at the end of the tunnel. And I wonder,“Is this all I have to look forward too?” #lightandmomentarytrouble #interviewwithachronicpainwarrior Click To Tweet
“Light and momentary” comes from the scriptures where the Apostle Paul shares that when we arrive in heaven this will all seem small and insignificant. (2 Corinthians 4:17) He shares that one of the purposes of our trials is that when we get through them we can encourage and comfort others who are experiencing the same type of pain.
So this year, I’d like to offer a series of interviews with chronic pain warriors. I would like us to all share and encourage one another so that we can “all patiently endure as we suffer.” (2 Corinthians 1:6)
And then though “we were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it.” Even when we expect that we will die, we will stop relying on ourselves and learn to rely only on God, who raises the dead. (2 Corinthians 1:8,9)
And now Interview #2 with Stacey Shannon. Stacey struggles with the “light and momentary pain” due to fibromyalgia and other UTI issues. Shannon shared on our Legacy Link-up about our father last summer. Greatest Legacy. She is a freelance writer and has her own blog Families with Grace. Find our interview below.
Would you share the short story of your chronic pain journey? Share some about the journey to this diagnosis.
I was 3 years old when my bladder symptoms first started. I kept feeling like I had a UTI, but the infection didn’t always show up. By the time I was 5, I’d been through every test possible for my bladder and kidneys and nothing showed up as abnormal. Everyone basically shrugged their shoulders and told my parents to have me avoid citrus and caffeine.
I continued having symptoms off and on, then when I was 13, my symptoms increased. That’s when I first got the diagnosis of interstitial cystitis (IC), which is basically chronic inflammation of the bladder. After going to a few doctors, my parents were able to track down a specialist who really helped me and prescribed a medication I still take nearly 30 years later.
My symptoms improved and stayed pretty well through high school and college then came roaring back with a fierce vengeance at the end of graduate school. By that time, I was married to my high school sweetheart. Instead of graduating and finding a job with a magazine as I had planned, I was mostly homebound because I was so miserable.
I was blessed to have a remission through most of my pregnancy with my daughter 10 years ago. After her birth, I developed uterine prolapse. When I was pregnant with my son seven years ago, I had remission again until the third trimester when my pain level went up significantly, thanks in part to the prolapse. Each time, any sort of remission ended with the end of pregnancy and breastfeeding hormones.
Throughout the years, I’ve tried an array of medications and treatments from medicine put directly into my bladder to physical therapy. I’ve driven hours away to see a leading IC urologist.
In 2015, I was diagnosed with fibromyalgia as well, which made all sorts of other body pain make sense. The two conditions often go together. These days, my bladder is mostly cooperative if I maintain my medicine regiment and am careful to avoid caffeine, citrus and vinegar (my dietary triggers). My fibromyalgia is a different story. It causes me the most issues these days.
Throughout this time, how was your faith walk impacted? Did you lose faith? Get stronger?
When I was 10 years ago, I asked Jesus to live in my heart. My husband and I both sought God’s will for our lives and got married young – while I was still in college, in fact. My husband knew about my bladder issues and was around at the end of my last really bad flare as a high school freshman. But neither of us expected IC to rear its ugly head again within three years of saying “I do.”
I had just graduated with two degrees in journalism since I’d felt God calling me into a career of writing faith-related articles back in high school. I was confused about why my health got so bad right when I had finished school and could get a job in a career that He’d led me to.
While I never lost faith in God, I did learn what it means to struggle with Him and how to be really honest with Him. I learned that I had to trust Him even when it didn’t make sense. He heard me whine and carry on. My husband encouraged me and often gave me the perspective that I needed. Each time I’d have a bad flare, I’d be shocked, having thought that I’d never had one again. Or I spiral into thinking I’d never, ever feel any better and everything was awful.
I also learned how isolating chronic pain and illness can be. All of my friends were starting their careers and I struggled to even go grocery shopping. I felt God leading me to connect with other people going through similar journeys, so I started a group for chronic pain and illness through my church.
For a few years, we met once a week. We went through a variety of Bible studies about chronic pain that helped me grow in my faith. In leading the group, I had to study the lessons more than just read them. I can look back now and see how God used that to help me grow in my faith and understanding that He was still at work.
God reminded me that His plan and my plans don’t always look the same. I learned through the years that my calling was still writing, but I was going to live it out in a different way as a freelancer than I had originally thought. Actually, my plan had been to work at a magazine for a few years and then freelance once we had babies. God just had me freelance sooner and, as a result, blessed us to be able to stay in the same city as my parents and my in-laws, which has been invaluable to us.
Was there a specific event that became a turning point in your faith during this journey?
One of the biggest turning points in my faith happened one day when I was 25 or so. IC is a disease diagnosed through the process of elimination. Symptoms can vary from one patient to another and no one treatment plan works for all of us. (In fact, only one medication has been FDA-approved to treat IC, and it now has been shown to have some horrible side effects for eyesight.)
I’d try whatever my urologist thought might help. I went through one treatment after another. Each time I’d start a new prescription or treatment, I’d feel hopeful this would be the one that would give me relief. When it didn’t, I’d feel disappointed and let down.
Then one day, I was driving my car when I felt God saying to me, “Put your hope in Me.” It was the reminder I needed that even if none of the treatments ever worked for me that I could always trust God would be with me. I’ve carried this life lesson into many scary situations since then. I can place my hope in God and never be disappointed in Who He is.
That day, my prayers began to change as well. I began to realize I needed to come to grips with not being healed. I had prayed for healing. We had talked about healing many times in my chronic pain group. I fully believed (and still believe!) that God has the power to heal. I have seen Him heal people. But God was gently telling me time and again that healing wasn’t going to happen for me on earth.
I began to pray for healing from my need to be healed. Since then I have continued to wrestle with healing at different times when it’s come up in church services and such. I know it’s possible that God may heal me before I get to heaven, but even if He doesn’t, I know He will heal me then and that’s the promise I cling to. That’s what I can truly put my hope in.
What scripture has become a comfort for you in this journey?
When I was a little girl, we had a dark hallway at our house that scared me. In third grade, I learned the first part of Isaiah 41:10, “Do not fear for I am with you.” I repeated that verse over and over walking down the hallway.
It came back to me when my bladder issues began in full force as a young adult. I looked it up and found the rest of the verse, which says, “Do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with My righteous right hand.” I have clung to that verse during dark moments and times.
I’ve gone into the ER repeating that verse to myself. I have clung to His promise to strengthen and uphold me on my hardest days when I have been ready to give up. It has brought me comfort and strength so many times.
How do you find comfort during these ‘ light and momentary’ painful days?
I definitely repeat my Bible verse for comfort and have used it as a breath prayer: “God, strengthen and uphold me.”
I also find other ways of comfort. Sometimes physical comfort leads to spiritual comfort. I sit with my heating pad. I work from the couch with my laptop instead of at my desk. I listen to uplifting Christian music. I watch shows I enjoy. I listen to my body when it tells me I need to rest or slow down.
I also remind myself (or sometimes my husband gently reminds me) that flares don’t last forever. Each time one hits, I worry it won’t go away and this is how I’m always going to feel. I can spiral quickly through anxiety and worry about how I’m ever going to be able to take care of my kids and such. Thankfully, I have years of experience to tell me that flares don’t last forever. And even if this is the time it doesn’t ease up, God will be with me. Do I always act like I know this? No, but I’m getting better at it.
What are some things that your family and friends do that bring comfort in your pain?
My husband has been awesome throughout this journey. I have gone into surgeries with him in the waiting room sporting a shirt that says: “My Wife Rocks.” He has never questioned my pain even though there is no physical proof of the pain or even the diagnoses. He has pushed me to get better treatments.
When my local urologist was out of ideas, my husband is the one who insisted on driving 4-1/2 hours to the leading IC urologist was not only worth it but doable. He’s driven there and back in one day many times to help me make those appointments.
My chronic pain also helped us learn to communicate even better earlier in our marriage. We learned the importance of approaching life as a team and not as opponents. Those lessons have helped us in other situations and the difficulties we’ve faced. I appreciate how he’ll do small things he knows will help me feel better like turning on my heating pad after a hard appointment while I go put on my PJs.
Along with my husband, my parents have also been incredibly supportive. They were the ones who first believed me when I was a preschooler who insisted I had to go to the bathroom again right after I had just gone or that it hurt when I went to the bathroom. They were the ones who found an IC specialist in a nearby big city when the pediatric urologist we saw said I was fine and just needed to learn how to urinate correctly.
I’m now 40 with kids of my own, but my parents still look out for and take care of me when they can. They offer to take the kids places when I don’t feel well.
My in-laws are the same. They have been so supportive and encouraging. Both my mom and mother-in-law have cleaned our house when I was recovering from surgery. They have helped take care of my kiddos when I needed extra help.
And my kiddos have been incredibly kind and understanding. As a mom, I wish they didn’t have to understand that sometimes mommy doesn’t feel well, but that’s my reality and so it’s theirs as well. I think they are more compassionate as a result. At 7 and 10, they’ll do things for me when I don’t feel well. My son is quick to want to carry heavy things, so I don’t have to. They have both prayed for me at different times, which blesses me beyond measure.
Offer some words of encouragement to those who may be searching for comfort in their own chronic pain journey.
Chronic pain is a part of your life, but it’s not your identity. My IC and fibromyalgia are part of who I am, but they are only a part. I am so much more than my pain. I am a mom, a wife, a writer, a follower of Jesus, a friend, a daughter and on the list goes. You are more than your pain, too.Chronic Pain is part of your life, but it's not your identity. #chronicpain #lightandmomentary #paininterviews Click To Tweet
While it’s hard to say that pain is a blessing, pain can teach us many lessons. God has used my physical pain to connect me with people I wouldn’t know otherwise. Those people have blessed me and encouraged me. God’s used my pain to teach me so many lessons and grow my faith. I am thankful for all of that. I wouldn’t have chosen to live life with pain, but I am blessed by the good things that have come from it.
In the end, on both good and bad days, God is good. He is our hope and will never let go of us.
Thank you, Stacey, for sharing with us today. I know I have connected with you in your story and others will as well.
Readers, I encourage you to comment below or connect with Stacey on social media. Stacey blogs at Families with Grace.
Are you a Chronic Pain Warrior?
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Stacey Shannon has two degrees in journalism and started her own freelance writing company in 2002. She has had nearly 1,000 articles in various publications. While she continues to work as a freelance journalist, copywriter and editor, she also is passionate about blogging. Her blog, Families with Grace, includes practical and spiritual tips for families to create homes filled with grace, love and faith.