Episode 26: Faith and Fibromyalgia

Faith and Fibromyalgia

When Your Suffering Brings Up Unsettling, God-Sized Questions

The experience of chronic pain can bring you to your knees. When our suffering is acute and unceasing, we often start asking questions that medicine and science can’t answer. Tami gently wades into these waters with us, offering viewpoints from a range of faith perspectives. Perhaps we can find a little solace in these true stories. Perhaps we can begin to develop and share a more robust theology of suffering and prayer.

  • What did I do to deserve this?
  • Why hasn’t God healed me? Did I not pray right or believe hard enough?
  • What happens when my body won’t allow me to observe a fast or practice my faith the same way others do?
  • What do you do when your faith family actually makes matters worse?

Links & Resources

  • Get free copies of Tami’s books here
  • Finding Your Faith Within Fibromyalgia is an ebook by Kate Straus, based on her experiences as an Orthodox Jew. In it, she shares the wisdom she gained from managing her fibromyalgia while practicing her faith with Orthodoxy, and some of the modifications she needed to make in order to do so. (For instance, when you have to take medication with food, and it’s a fasting holiday, how do you do that?)
  • Below you will find both a full transcript and video of the episode, with any studies mentioned in the show linked in the transcript.
Play Video

Transcript

You’re listening to the Fibromyalgia Podcast, Episode 26.

Welcome to the Fibromyalgia Podcast! I’m your Coach, Tami Stackelhouse. 

In today’s episode, we are going to be talking about the intersection between your fibromyalgia and your faith. Now, of course, as always, I am going to be speaking from my own experience, but I’ve also got quotes from several of my students and clients and coaches to round out the experience and give you some insight from a few other perspectives.

[01:22] Before we dive into today’s episode, though, I have another listener shout out. I love doing these. It’s just so fun for me — one to get your love notes but also, to be able to celebrate you guys. I’ve had several people lately say, “Yes, please use my real name, so my family knows it was really me.” If you want to be included in our listeners’ shout outs, by all means, just send us a note. You can choose to be anonymous, or you can say, “Hey, that’s me. She said my name.”

[01:57] This note we got a few weeks ago is from Susan, and she says, “I am so happy I found your podcast. I was just diagnosed with fibromyalgia, which was a self-diagnosis. Finally my primary care doctor and my neurologist agreed. I’ve been working hard to keep it going with all your wonderful information and tips. I think my favorite so far is ‘Saying No to Say Yes.’ It is so very true, and sometimes so difficult to do. My coworkers don’t understand why I don’t socialize and never have every moment of a weekend full of plans. I just laugh them off and say, ‘I like my quiet alone time.’ Keep talking to us, Tami. I listen to you on the way to work every morning. It helps to listen to someone who knows the struggle just to get up, get ready, and get there.”

[02:53] Thank you. Thank you, so much, Susan. I love that I get to be part of your morning commute and getting you ready for work in the morning. That’s actually one of my favorite times to listen to podcasts also: when I’m getting ready, when I’m brushing my teeth and getting dressed, and same thing when I’m getting ready for bed at night. If you haven’t tried, you might have time…. Obviously, if you’re hearing me, you are listening to podcasts. That is one of my favorite times. Also, in the car is great.

[03:22] If you are curious about what she said about her favorite so far being “Saying No to Say Yes”, that is actually Episode 12. This idea, this philosophy, is one of the cornerstones of how I live my life, and that is that saying no is never about saying no. It’s all about choosing what you get to say yes to. Sometimes, in order to say yes to one thing, it means saying no to something else.

If you are ever in that place where you can’t do all the things and you have to say no to something, just remember it’s not about saying no. It’s about saying no, so that you can say yes to something else that’s more important to you.

[04:11] Of course, that means it’s really important to be clear on what those things are that are important to you, so you can make your choices count. If you haven’t, go back and listen to Episode 12. You’ll find it wherever you listen to podcasts, just look for Episode 12. “Say No So You Can Say Yes” is the title of it. You can also find it on our website at FibromyalgiaPodcast.com/12.

[04:37] All right, so we’re ready to talk about the intersection between fibromyalgia and your faith. I’m going to be honest here for a second. I have been meaning to record this episode for a couple of days now, and I’ve just sort of kept putting it off. Even today, after I got all ready, got dressed, got my makeup on, got my hair done, and got all ready to do this for you guys. I was feeling really unsettled and, honestly, nervous, which I never feel nervous doing these.

[05:15] I love talking to you guys. When I sit here and do a podcast episode, it’s like I’m recording a voice memo for you as an individual person. I hold you in my mind and I talk directly to you. This time, however, I was feeling a little bit nervous, and I realized that it’s because talking about fibromyalgia is easy. There’s science behind it. We can point to specific things and say, this works, this doesn’t work. Here’s what helped me.

[05:52] There are a lot of emotions that are attached to fibromyalgia, but there isn’t that same sense of belief, right? Like, somebody could choose to not believe in fibromyalgia, which some doctors say, but we’ve got science to back that up. It doesn’t really matter what you believe, because we’ve got an objective truth.

[06:15] When you talk about faith, when you talk about your spiritual beliefs, that’s a lot more… I don’t even know the word to use. It’s just a lot more personal. It’s generally a lot more private, and it can also be divisive, right? It can divide families and friends. It’s religion and politics, the two things you don’t talk about with other people, right?, if you want to make sure you get along.

[06:42] It made me a little nervous to do this episode, but at the same time, I know that for me and for many of my clients, students, and coaches, our faith — how we interact with the world, our belief in something outside of ourselves — often gives us the strength to go through the hard parts of fibromyalgia and helps us to, I don’t know, believe that there’s a bigger purpose, that we’re part of something greater, that our suffering means more than just our suffering.


[07:24] 
I can’t ignore this topic, and we have to talk about it. I thought, what better time to talk about it than the episode that comes out on Christmas Eve. 

Here we are, and I realize that all of you listening here may or may not even be celebrating Christmas. You may be part of a different religious background, a different tradition. You may celebrate in other ways. I’m always going to be speaking from my own personal perspective and experience. For me as a Christian, Christmas and Easter are the core, the two pillars of the things that I believe.

[08:09] Let’s talk a little bit about the challenges of fibromyalgia when it comes to our faith.

[08:18] When you’re diagnosed with fibromyalgia, there are so many things that change, right? You can’t do the things that you used to do. Your body sometimes doesn’t even feel like your own. You can’t interact with other people. Their expectations of you, you’re not meeting anymore. We end up with an identity crisis.

We’re wondering, “Who am I now?” A lot of times that even extends into “Who am I in my faith? Who am I as a Christian? Who am I as an Orthodox Jew? Who am I …if I can no longer practice my faith in the way that I used to …if my body doesn’t let me fast …if it’s hard for me to get up and go to church?” Or whatever it might be. We have that challenge, right?

[09:14] We also end up getting extra things sometimes dumped on us from people who don’t understand. Unfortunately, some of the biggest wounds that we receive come from the church. If you are in a church that believes that God heals, and maybe the people in your church have prayed for you, well, what happens then when God doesn’t heal you, right? Does that mean there’s something wrong with you? Does that mean you didn’t believe hard enough or that we didn’t pray right? It adds all these extra layers to something that’s already difficult.

[09:58] I remember years ago, when I was starting to see some symptoms. I had a Bible study group that I was part of, and they would pray for me. They were praying for me to get well. If you take the short view, when this was happening over 10 years ago, when they were praying for me, it seemed like those prayers weren’t being answered.

Here I am now, so many years later, and I am thankful that God never answered that prayer, because if He had answered that prayer, you and I wouldn’t be talking right now. I would not have the life that I have right now, and I would not be helping you. You would not have the help that you need.

[10:48] There’s a quote that I love from Billy Graham’s wife, Ruth. I don’t have the exact quote, but she basically says that, “I am so glad that sometimes God doesn’t answer prayers, because if he had, I would have married the wrong man many times over.”

[11:08] I think that we see things from our perspective. The beautiful thing about believing in something bigger than yourself is that there is another perspective, right? It’s the same kind of thing as choosing, maybe, to work with a Coach. You can only see what you can see from your perspective. Having someone else look at your situation gives a whole different perspective that gives you new ideas. It gives you different ways of doing things. It gives you a shift in perception that maybe helps you see things a little bit different.

[11:48] That’s what I think faith does for us, too. We get to see things from a longer, more eternal perspective of being here. Because I went through all of the pain that I went through… because I was diagnosed with fibromyalgia… because I wasn’t healed… I am now in a place where I can help other people and so many other things. I think that it gives us that “outside of us” perspective, which is great.


[12:23] 
I was taught growing up, and I’ve been so thankful for this small little thought, that God always answers prayer. Sometimes, the answer is no. Sometimes, the answer is yes. Sometimes, the answer is not now, but He always answers. It’s just not always the answer that we want to hear. I think in my case, that answer was, “Not yet, not now.”

[12:49] There’s something more that I want to do here, and I want to share more than just my perspective here. I have a few quotes from some of my students and coaches and clients that I want to share with you, just to share the perspective, so that you know you’re not alone, but also maybe to give you some new ideas to think about.

[13:17] About a week ago, one of our listeners filled out a consultation request. She wanted to talk to us about working with a Coach and getting some help. When she had her call, she said… This next part I’m going to read to you, because this is literally what she said on the call.

[13:42] This is from Erin. She said, “One of the downfalls of being a Christian that has fibromyalgia is that you get so many people telling you that if you were really following Jesus’ will in your life or whatever it is, then you would be healed. It’s so ridiculous.” 

She went on to say, “The other day, I had to tell someone, ‘When God is ready to heal me, I’m ready for it, but He might not be.’ Accepting His will in your life doesn’t just mean when He’s giving you a Cadillac.” She said, “It’s been really hard to say, ‘I will accept and love you, God, no matter what I go through.'”

[14:25] I think the experience that Erin shares is one that a lot of people in Christian churches [experience]. I do see this in other faiths as well, but those of us who believe that God heals, this is something that we run into. It’s so heartbreaking and frustrating, and I think it breaks God’s heart also, to be honest.

[14:51] When somebody says, “Well, if you are really following Jesus’ will in your life, you would be healed,” that’s just so wrong. I’m not going to turn this podcast into a Bible study, so I am not going to go into all the ways that that is wrong. If you are a Christian, and you’re sitting here, and you’re listening, and you’re wrestling with that belief, I would encourage you to look up in your Bible, all the places where people ask to be healed. There are times when they are healed, and there are times when they are not. It doesn’t ever have anything to do with that particular person, whether they have earned it or deserved it or prayed or asked correctly. God just does what God does.

[15:43] I also want to share some of the journeys that a few of our Coaches and clients have been on. This one is from Julie. She is currently in the class becoming a Fibromyalgia Advisor. 

She says, “When I was at my sickest, I held onto the hope that God still had a plan for me and my life. My view on life had to be shifted to see who I was versus what I could do. As a Christian, sometimes I feel we are measured by our works, by what we can do. Yet I know that couldn’t be further from the truth. God has taught me that our worth is in who He created us to be. I remember when I had to stop working because of the pain and fatigue. I was so confused by it. I had a job that I loved and really thought it was where God wanted me. I was a counselor for an unwed mothers maternity home. Now, how could that be something He would not want me to continue with?

[16:49] “Yet I couldn’t keep up with it. During that time, I was either angry with God or thankful that I was able to be at home and take care of myself. There were times when I would think, ‘How can I handle one more day?’ Yet I felt like God was always there, speaking to me in a devotional or through an answered prayer. I never felt alone in my pain, and that was something hard to explain. He was and is always right there with me during every part of it.”

[17:23] She goes on to say that she believes it was totally God’s work and a miracle when she found me and the International Fibromyalgia Coaching Institute and learned that there was a way she could help people again.

[17:39] She said, “I dreamed of being able to help people, and taking the Advisor program seemed the perfect chance. I have the desire in my heart to be a Coach and help others with fibromyalgia every step of the way. I have felt God leading me here. I’m so grateful.”

[17:57] I also want to read a story from Kate. Kate is Jewish. She practices in an Orthodox manner, things like all of the Jewish holidays and the fasting holidays, the Sabbath. Practicing that in ways like, “I’m not turning on light switches.” It’s been really interesting for me working with Kate over several years. Kate has been to a few of our retreats, and just learning the ways that she practices her faith, I can see that there are so many things that benefit fibromyalgia, right? Like having a day of rest definitely is a benefit, but also [there are things] that are a challenge for fibromyalgia.

[18:52] Kate says, “My whole life, how I’ve practiced my faith has been based on life experiences. As a younger, more immature adult, I would blame G-d for anything and everything. I would get upset. I would yell and cry, and I would do that in the comfort of my own home, where nobody saw it happen. There are still days that I do that, but the pain is not as intense as it once was.”

[19:19] She said, “My diagnosis actually came as a relief, because it meant that all of the symptoms I was diagnosed with were something real. I thanked G-d for that, but then I hit a brick wall when it came to finding doctors who accepted fibromyalgia as a diagnosis. Again, I would get mad at G-d. Someone once told me that it’s totally appropriate to get mad at G-d at times. He can handle it.

[19:45] “My faith and spirituality has changed quite a bit since I was diagnosed. I’m more open to talking to Rabbis and respected teachers and my medical team about how I observe the Sabbath and the holidays with modifications, and that those modifications did not mean I wasn’t observing Judaism. It was just a different way of doing that. The acceptance took awhile. Part of that was due to my own pride and self-worth, and I didn’t ask for help as much as maybe I should have. I’m much better at it now, but there’s always room for improvement.”


[20:23]
She goes on to say, “I’ve recently moved, and the people at the synagogue are so incredibly understanding and kind and offer so much help, and if I haven’t been able to get to the synagogue for a while, when I return, I am greeted with warm smiles and hugs. There are still days where I’m mad at G-d for giving me this diagnosis on top of everything else, but mostly I consider it a gift. I had to stop doing my job when I was diagnosed, and that broke my heart. Now, I am lucky to help other people through the rocky road of life with chronic illness, and even get to play with babies a couple hours, a couple of days a week.” Kate has actually been able to go back to work outside the home, and that’s what she’s referring to there.

[21:13] Kate has put together an ebook based on her experiences as an Orthodox Jew and practicing her faith with Orthodoxy and some of those modifications she was talking about. For instance, when you have to take medication with food, and it’s a fasting holiday, how do you do that? She has worked out a lot of that stuff, and that’s actually something that she helps her clients with. If you’re interested in her ebook, it’s called Finding Your Faith Within Fibromyalgia. We will include a link to that in today’s show notes. You will find that at FibromyalgiaPodcast.com/26 for today’s interview.

[22:02] I also wanted to share from two people who have been on the podcast already. One of them is Dr. Robin Pfaff, who was interviewed just a couple of episodes ago in Episode 23. If you’re interested in learning more about Robin from Robin, you’ll find that at FibromyalgiaPodcast.com/23.

[22:26] Robin says, “The pain and distress of fibromyalgia and other issues caused me to go deeper in my faith, and I had to work through questioning myself and God. I wondered, what did I do wrong to deserve this affliction?” She said, “I had to develop a more robust theology of suffering and prayer. There are no easy answers. There are no pat formulas to deal with intense and protracted suffering. Sometimes, prayers aren’t answered. Sometimes, God seems absent. I experienced years of ‘the long, dark night of the soul.’ I felt angry. I felt despair. I felt abandoned by God.


[23:11]
“Then, I found comfort and wisdom in the ancient liturgy of the church, after having grown up in a style of faith and worship that was primarily focused on belief in right doctrine and praise songs. My own suffering eventually resulted in me being called to helping professions like counseling and coaching and in the development of a deep compassion for those who suffer. I developed the ability to endure adversity and the patience and long-suffering to walk alongside those whose difficulties last a long time and are not easily resolved.”

[23:50] I have to echo what Robin said there. I know one of the things for me, as I have journeyed with fibromyalgia as a Christian, is just really coming to identify in a whole new way with suffering. You might look at it as identifying with the suffering of Christ. If you are also a Christian, you might believe that.

[24:17] It could also just simply be the suffering in the world, hurting people. Right? I have a whole different perspective now on things like accessibility and handicap parking spaces. I have a whole different perspective on things like going to communion and having the bread be regular bread when you need to be gluten-free. There are all these little things that the world and our churches aren’t necessarily set up for, for those of us who have chronic health issues.

[24:58] Not being at church, like Kate was talking about, and not going to synagogue, and still having people receive you warmly, rather than, “Oh, you’re one of those backsliders. Maybe your relationship with God isn’t quite so good, otherwise you would be here.” It has nothing to do with that. I think that can be, definitely, a challenge. Relating in a whole new way for other people who are in a similar type of situation.

[25:36] I also have a quote here from Julie Hamilton. She is our HR guru, and she helps her clients with things like work accommodations, being able to keep working when they have fibromyalgia. You will find her interviews in Episodes 14 and 15. You will find that at FibromyalgiaPodcast.com/14 or FibromyalgiaPodcast.com/15. Those two episodes are on using the family medical leave act with fibromyalgia, and requesting special work accommodations that will allow you to keep working better and longer when you have fibromyalgia.

[26:21] Julie says, “I think through fibromyalgia, my faith has actually gotten stronger. I’ve learned to lean on God and pray through my bad days. Many disagree with me, but I believe I have fibromyalgia for a reason. My reason is so I can help others, but also to spread the love of God to my clients. Not that I preach to them, but I ask what their beliefs are and if they believe in the power of prayer. I’ve never been angry with God for fibromyalgia, but I pray that I will be able to use it to help others. I start and end each day with a devotion, along with prayers throughout the day and before each of my client calls.”


[27:07]  
I have done a very similar thing. It is my act of service, doing things like this podcast or speaking or working with my clients. I am always asking, how can I serve? What am I here to do? What can I offer? How can I show the light of love in a dark situation, in a hopeless situation? You guys have heard me say many, many times that “hope” is my word. That is what I’m here for: to shine a light in the dark and be hope to the hopeless.

[27:51] This episode has been exploring a lot of things. We’ve explored some of the challenges. Maybe having people at your church not understand why you can no longer do all the things you used to do, and maybe even judging you for it. Sadly, it’s probably true.

[28:14] We’ve also talked about your own faith and your own challenges: “God, are you there? Are you listening to me? Why aren’t you healing me? What did I do to deserve this?” Finding that place of acceptance and hope that maybe there’s a reason. Maybe there is some new good thing that will come out of it.

[28:38] As a Christian, one of the verses that I always fall back on is that, “God works all things for the good of those who love Him.” It says all things. This verse has held me up through so many things. It has held me up through my fibromyalgia, believing that God is working good through this somehow, some way. I might not know, I might not understand, but ALL things are working for our good.


[29:13]
It held me up through my sister’s cancer diagnosis and when she passed away. Knowing that “all things” means ALL things. That means even with her sickness, her illness, her death, that God was somehow working some good behind the scenes that I don’t understand. Holding on to that, even when maybe evidence is showing me something else. That’s what faith is. It’s believing and holding on to something even when there isn’t any evidence.


[29:47] 
Fibromyalgia is an opportunity for you. It’s an opportunity for all kinds of things, right? It’s an opportunity to strengthen your gratitude and practice. It’s an opportunity to get really good at saying no. It’s an opportunity to make better choices in your life. It’s also an opportunity to choose what you believe and to strengthen that belief and your faith.


[30:16] 
Years and years ago, a friend of mine at church shared with me some about the 12 Steps. He was in AA, and I had never been, and I was curious about all of that. I’ve never forgotten one of the things that he said to me. He said that the first three steps of the 12 Step process can be summarized as: I can’t, He can, I’ll ask.


[30:46] 
I don’t think fibromyalgia is something like an addiction that needs a 12 Step process, necessarily. I do believe those first three steps are good for all of us: 

  1. I can’t. I can not deal with the pain and the loss of my life and the fatigue that I have. I can’t, but 
  2. He can. He’s bigger than me. Whatever your beliefs are, God is bigger than you and your pain. Find something to believe in. In AA, they often tell people to find something that’s bigger than you. Even if you just believe in a light bulb, you know. You can’t do it. Find something that’s bigger than you to believe in, and then ask for help. I can’t, He can… 
  3. I’ll ask.That asking is simply just prayer — asking for help, for strength, for healing. It’s never wrong to ask for that.

[31:49] I believe, for me, after all these many, many years, I have found that healing. That doesn’t mean that I can go back to all my old ways, right? That doesn’t mean I can go back to eating badly and working too many hours and not getting enough sleep and being overly stressed and all of the things that I used to do.

[32:13] I do believe that we do find a measure of healing. Sometimes, it’s a healing of our hearts. Sometimes, it’s healing of our bodies. Sometimes, it’s our relationships. There are many, many layers of healing, as well. I believe we won’t be all the way there until we get to heaven, but on this side of heaven, we will go through many healings over and over again.


[32:39] 
That is my message to you on this Christmas Eve, my wish for you. I pray for each and every one of you. I pray for the people who listen to this episode, that there is something here that will touch your heart and that will change your life and bring you that small measure of healing of your heart, your soul, your mind, and maybe even your body, too. We’re working on bringing you all the information that we can to help make that more possible.

[33:11] All right, you guys. Stay with us! In the next couple of episodes, we’re going to be talking ALL things New Year’s resolutions. We’re going to be talking about goals and habits and why I think you CAN set goals, even with fibromyalgia, and you CAN meet them, even with fibromyalgia. We just have to do it a little bit differently. You’ll notice that’s a theme: We can do it. We just have to do it a little differently. Resolutions, per se, maybe not so much. I’m not a big fan of New Year’s resolutions, but I am a fan of making choices and making your life better and setting goals that you can meet to accomplish that.

[33:53] We’re also going to be talking about exercise. I have a professional athlete who has fibromyalgia coming to speak with us. We will be talking about how you can exercise with fibromyalgia, but you have to do it properly. So, we’re going to be talking about the proper way to do that.

[34:12] Then, we will be really close, at that point, to our next “Ask The Coach” episode. If you have questions, if you have thoughts, comments, please send them in. Go to FibromyalgiaPodcast.com and under the Contact menu you’ll see Ask The Coach. I would love to hear what you would like me to cover in our next “Ask The Coach” episode.

[34:36] We are also starting to plan our next batch of ten episodes. I plan these in ten-episode segments, and we are about to wrap up the next ten and get started on episodes 31 through 40. If you guys have any particular subjects that you would love for me to cover, I would love to have you send those in.

[34:57] As always, if you ever need any help, if you would like to talk to somebody, get a different perspective, have some support, talk to somebody who gets it and who understands and who isn’t going to try to tell you it’s your fault that you’re sick. We would love to have a conversation with you. Go to FibromyalgiaPodcast.com. You’ll see, Find A Coach in the menu there. Just fill out a consultation request. We would love to chat with you.

[35:29] We do have Coaches who are taking on new clients. We have people from all different faiths, and I’ve mentioned a few of them on our episode here today. I even have space, at least right now, for a couple of VIP clients. If you are looking to work one-on-one with me, I do have a couple of openings right now, and you can do all of that at FibromyalgiaPodcast.com. In the menu, just look for Find A Coach.

[36:01] All right, you guys. Have a blessed Christmas. Have a wonderful New Years. Remember: say no to some things so that you can say yes to what’s really important. Listen to your body, listen to your heart and your soul, and remember, don’t just live for today. We are looking to get better, which means you get to save some energy for your body for healing.

[36:25] We will be back in the new year to help you with all things New Year’s resolutions, goal setting, habits, all that fun stuff. All right, you guys! Love to you all. Talk to you in two weeks. Bye!

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