This interview is about ME/CFS and church.
I hope you find it helpful, whether you’re a Christian living with chronic fatigue syndrome (or another invisible illness), or a Christian who enjoys good health and wants to understand the ways that chronic illness can affect people’s involvement in church life.
Kristy is 38, married and the mother of two young children, all while dealing with the illness commonly called Chronic Fatigue Syndrome. In her “spare” time, she has created Fruitful Today for us to enjoy and learn from. Read on for more of her story.
Kristy’s church story
Hi! Welcome to the first Build a Bridge interview. I’m Connected Carole and I’ll be guest interviewing Kristy today. After all, who wants to interview herself? I’m happy to be able to question Kristy about her life and her church involvement. Welcome, Kristy!
Thanks, I’m looking forward to being the interviewee!
Could you tell us about your invisible illness and how it affects your daily life?
I have a condition called ME/CFS. I’m mostly confined to my home because I need to lie down and rest regularly throughout the day. If I over-exert myself I can end up in bed with flu-like symptoms for days, even weeks.
So, you can’t do too much, otherwise you get sicker? Is that what you mean by over-exertion?
Yes, that’s right. But over-exertion might not be what you’re picturing. For me, it can be something as simple as walking up the street, or sitting and chatting with a friend for too long. It’s pretty intense!
Indeed! Can you tell us: What exactly is ME/CFS?
The World Health Organisation classifies ME as a neurological illness, in the same broad category as Multiple Sclerosis or Parkinson’s. CFS stands for chronic fatigue syndrome. I won’t go into the reasons for the two names — we’d be here for half an hour!
(Laughs.) Since “fatigue” is in the name of your illness, I assume you’ve had more than your fair share of being very tired. How did it impact your earlier life?
Well, chronic fatigue syndrome involves more than just “being tired” for a long time; but, yes, fatigue is a big part of it. I’ve been exhausted for my whole adult life, really! But I still managed to hold down a full-time job. It wasn’t until I was finally diagnosed with ME/CFS, after my fatigue became disabling when I was 34, that I learnt I’d been suffering from a milder form of the disease since age 21.
I’ve read one of your posts where you nicknamed ME/CFS “Compost”! Why did you choose this nickname?
Oh! (Laughs). Yeah, I named it compost because… Well, honestly it was because I was trying to find a way to describe the severity of my illness without it sounding glib and depressing. It was an awareness-raising post. So I put a positive slant on it by saying that ME/CFS was like compost — putrid and stinky and awful, but it was actually producing some beautiful things in my life.
Alright, let’s move on to our church questions now. How long have you been a Christian?
I’ve believed in God my whole life; but I’d say age 14 was a turning point for me, in terms of calling the faith my own and making a personal commitment to follow Jesus.
Can you describe your involvement in church before your illness became severe?
I used to attend church every week. I was involved in all sorts of things – small group leadership, hospitality, welcoming newcomers, tidying up after the service on Sundays, providing supper. And I enjoyed it for the most part. Church was like family to me. Church really was central to my identity, and to my social life too.
What would you say was the hardest thing about church after your ME/CFS symptoms became disabling?
Well, at first, I wasn’t able to attend church at all for almost a whole year. That in itself was hard – it felt like a big chunk of my life was missing.
So, you couldn’t attend church then. How was your home life at this time?
Our little family was in crisis for quite some time initially. We had a newborn and a toddler, as well as a not-yet-diagnosed debilitating illness, which spiced things up a bit! I’m sure glad that phase has passed!
What was it like when you finally started attending church again?
Honestly, it was a bit weird at first. I remember, service after service, just sitting there with tears streaming down my face. Not tears of joy to finally be able to worship again with God’s people.
Nope, my tears were much less spiritual. They were tears of distress, and bewilderment, and stinging grief. Because I was sitting in the same chairs, and singing the same familiar songs with the same familiar faces; but I wasn’t the same person anymore. I felt like a shadow of my former self… I felt completely broken. And “un-useful”.
That’s an interesting term. What do you mean when you say you felt “un-useful”?
Well, I guess becoming chronically ill was a real eye-opener for me. I realised just how much my identity as a Christian had always revolved around my own abilities. I loved feeling useful to God. I loved doing stuff for him. It was terribly hard at first, losing that ability to actively serve at church. (What’s God’s Plan for my Life? explores these ideas in more detail.)
Is there anything else you found hard in those early days?
Um… Another thing I found quite hard was the fact that I looked fine. I didn’t “look sick”! On the outside, I’m the picture of health. My illness is hiding inside—where some of my body’s systems aren’t functioning as they should. So people just had NO IDEA that I had become severely unwell. Hugely frustrating!
Tell us about your involvement at church now. Can you describe a typical church service?
I aim to attend about once a month on a Sunday. It’s usually possible, as long as I rest in the days leading up to it. I usually stay seated during worship time – when everyone stands and sings together. I often just listen, rather than singing out loud, to preserve my energy. When all the kids leave for Kids’ Church, about 15 minutes into the service, I slip out the door with them.
To help at Kids’ Church?!
No! Maybe in years past, but not anymore! (Laughs.) No, I go to have a lie down in the church office! From there I can hear most of what’s going on in church, so I don’t feel like I’m missing out altogether. After 20 minutes or so, I sneak back into church. I sit for the rest of the service, then stand for the final song – I’m OK to do that after my rest!
Are you able to stay for a chat after the service?
Yeah, most times I’m able to have a couple of brief conversations. I try to find a seat (which was embarrassing in the early days – sitting when everyone else was standing!). If finding a seat is impractical, I just crouch down for a few minutes to fend off the faintness. I think people are sort of used to it now! As am I… But it took some time to adjust to this new way of doing things.
Your experiences sound so familiar to me. I’m glad you’re comfortable enough with the people to adapt the activities to your abilities. And glad the people accept you. Which brings up the question: How does your church deal with the issues of illness and grief? Has the culture at your church helped or hindered in your chronic illness journey?
I’ve been fortunate enough to belong to a church where chronic illness and mental illness are talked about openly and without judgment. The topic of suffering has been addressed many times in our sermons over the years.
This is perhaps the greatest gift my church has given me: a thorough grasp of the Bible’s teaching on suffering. It’s what has sustained me and kept me from despair. I’m so glad I heard all these talks before falling ill! It prepared me spiritually for the rugged road ahead.
What have been the most helpful things your church has done to help you adjust to your “new life” after diagnosis?
- Accepting me as I am.
Since developing my chronic illness, the leaders at church have never added to my burden by requiring more of me than I’m able to give. I’ve never been made to feel guilty for my less frequent attendance either. This in itself has been a huge blessing, and a relief!
- Including me in a small group and inviting me to share my story with the group.
Despite my frequent absence on Sundays, I still feel a strong sense of belonging at church thanks to our weekly Home Groups.
But to be totally honest, even with Home Group there’s been an awkward adjustment period!! For example, I need to lie down when I start to feel dizzy – there’s a special couch for me, which people now leave vacant for me each week.
And when new people have joined the group and noticed me reclining on the couch, they’ve been so taken aback that they’ve giggled! Not rudely, just in shock. I don’t take offense, as I can see it from their point of view (I don’t “look sick”), but I do still find it embarrassing.
Reminds me of the book, “But You LOOK So Good!”.
Oh, really? I haven’t read that one yet; I’ll have to check it out. Yes, looking so well while being so unwell can be a real stumbling block to relationships at church.
After I got laughed at on a few separate occasions, I talked to the leader about it. I asked if I could speak to the group about my chronic illness. I was given some interview questions to answer, which helped me know what to say. Well, it ended up being one of the most positive experiences I’ve had at church since becoming ill.
The feeling of validation when I talked openly about my experiences, and shared how God has helped me to grow, was just so healing for me. It was a new way for me to serve: in my brokenness. Thankfully the group found it uplifting and eye-opening, and I’ve been asked to speak again during our upcoming study series on Job.
You’ve talked a bit about the leaders. How about regular members of the congregation? How have they helped to lighten your load?
In terms of practical help, a couple of the mums at church offered to care for our kids, who were aged 1 and 3 at the time. These two wonderful, servant-hearted ladies helped take care of my kids on a regular basis: one took them on Mondays, the other on Friday afternoons. I don’t know how we would have managed as a family without their help. Eventually some spots opened up at daycare, so I was able to relieve these friends of their “duties”.
And these were just plain old church members – not leaders, or pastors?
Nope, just people who knew me from Bible Study groups in previous years and Wednesday playgroup. I’ll never forget the service they did to our family. Truly, it was a blessing straight from God. One friend helped for almost one whole year, the other, for more than a year!
Wow! I have one more question: Do you have any tips for other people going through similar experiences?
Yes, I do. This is a topic I feel very passionate about, hence the Build a Bridge interview series! I’ve struggled a great deal, and I can’t say that the struggle has completely disappeared over the past four years — I still have days and weeks when I battle the urge to let a bitter spirit take root in my heart. But here are some things that have helped me to negotiate my newly-defined relationship with my home church. I hope our readers will find them helpful.
- Work through your grief proactively (with a counsellor, if needed).
It will make your pain and isolation more bearable. It will create opportunities for personal growth. After all, we’re powerless to change other people, aren’t we? But we can make steps towards growth in our own lives. I don’t know how I would have coped without the help of my counsellor.
- Let people know about your health struggles.
In the beginning, I felt so forgotten by my church family. It was terribly overwhelming. I felt like my congregation hadn’t even noticed that I’d been gone! Also, they were so busy! This was hard for me to accept at a time when I was desperately trying to learn the art of resting. In hindsight, I take partial responsibility for the fact that people hadn’t noticed my absence.
In the early days, I deliberately refrained from informing people at church about my illness. Only the leaders knew, and I requested confidentiality from them. I needed my privacy. And in a way I think that was probably appropriate during the initial period – I needed time to get my own head around my diagnosis; I didn’t need to be having conversations about it with everyone before and after the service! But now I can see how my secrecy did me a disservice: it kept my invisible illness even more hidden!
- Speak up when you need help.
The hardest thing I’ve had to learn is how to voice my needs. I’ve learnt to be very specific and open at church, to get the support that my family and I need. About a year into my illness, a lady from my congregation came up to me after the service. I was hiding away in the crèche, with my toddler, not ready to engage in small talk as I’d been a bit teary during the service.
This lady sparked up a conversation with me. She asked where I’d been (after almost a year of absence, remember!). Well, my tears started to flow again, of course: someone had noticed I’d been gone! She sat down next to me and listened while I poured out my heart, through sniffles and sobs.
Then she asked if she could pray with me. During her prayer she apologised on behalf of the congregation for not being there for our family in our time of need. Wow. This meant a great deal to me. I’ll never forget that act of humility and kindness.
But after praying, she also gently challenged me, “You need to ask for help! We had no idea that you’d been so unwell!” I dread asking for help. I’ve always valued (even idolised?) self-reliance… Whether we like it or not, it’s a skill we need to develop when we’re chronically ill — and if you’re anything like me, it’s a definite “not”!
- Be gracious, even if they don’t do a perfect job.
Thankfully the ministry team has graciously listened each time I’ve falteringly spoken up. And slowly, over the last couple of years, my church has been learning to support our family in increasingly meaningful ways. We’ve made some baby steps in the right direction.
I think the relationship people have with church is a bit like a marriage partnership: you need to have open dialogue in order to make it work. And the union thrives when both sides come together with humility, a readiness to forgive, and a spirit of reconciliation.
My church hasn’t done a perfect job when it comes to reaching out to me. But I have to remember that God will judge me with the same measure that I use to judge others… How many times have I not helped a fellow Christian who’s in need? I hate to think! Probably more than I could even count!
So I think we need to extend God’s grace to the people in our lives whom we feel have failed us or forsaken us in our darkest days. God accepts us despite our many imperfections. We need to work really hard at accepting our church with its imperfections.
Speaking from my 40 years of experience, I completely second your thoughts. I can’t say I practice them all — yet, anyway. But I’ll work harder at them. If we could apply these principles, everyone would benefit. Thank you so much, Kristy, for your time.
You’re welcome. Thank you for interviewing me, Carole! I really appreciate you giving so generously of your time to contribute to this series.
Want to learn more about Kristy’s invisible illness? Here are some of her favourite links:
- Favourite infographic
- Favourite comic strip
- The Mighty – personal stories written by ME/CFS sufferers
- Best article she’s ever read on ME/CFS!
- This article comes a close second!
Coming up next
Ally, a teenager who lives with a number of invisible chronic illnesses, will be telling her church story. Can’t wait to hear what she has to share!
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Kristy thank you soooo much for this. I have what feels like a thousand things to say… and don’t know where to start. I went from this church to another as you know (moving overseas) and the difference was stark. It has been good for me to hear your story and your graciousness. I carry soooo much pain with me from my experience, and having the help at the second church emphasised that difference even more. I know that I need to move past that pain and be more forgiving but I find it really difficult. I totally understand that people don’t mean the things they say and do, but the damage is immense. Reading this has been really good for me, especially as I had taken it so personally….
Anyway, out current church is really well set up for people like me, I sit in a chair that means when everyone else stands I can see over their heads (without being in a “special” chair) and while people still make off handed remarks (like “come on Hop-along”) which are deeply distressing sometimes, for the most part people are brilliant. I’m a long way in my condition and I am happy to say that I am over the guilt a long time ago (of not contributing like I used to) but don’t take that as me being good haha, it is because I gave way beyond what I was able to give for way too long… in other words I learnt the hard way. Our bible study are great too, and as we eat each week it means no cooking for me on Wednesdays and people bring me my food and so on almost without thinking now. I am so glad that you have a safe space too 🙂
Jennifer, thanks for your comments. I’m sad to hear that you still carry pain from some of your past church experiences… It is hard, isn’t it? I’m glad my story has encouraged you. (But at the same time, I hope it hasn’t left you feeling condemned or “less-than” at all. Forgiveness is not an easy thing for anyone to do! You’re not alone in that struggle.) I do hope you can feel a sense of healing from past wounds someday. I’m really interested to hear what your subsequent churches did differently, to help you feel more supported! Much love, Kristy.
Reading your interview reminds me of the portion of my school song that said “faith and love will conquer all the way”, I am very sure you are full of these two and this makes you achieve the impossible, specially writing the blog and sharing your experiences.
John Gatesby recently posted…Do I Have POTs?
Thank you for your words of encouragement, John. Indeed, faith and love do conquer all the way, thanks to God’s nearness in our suffering!
Kristy recently posted…Inspiration for carers: Jesus the Servant-King (Phil 2:8)
Thank you so much for sharing. I really identify with this and have the same condition. I have not been able to rebuild my faith without the pillar of feeling ‘useful’. I stopped going to church altogether having been really involved. Now I am almost recovered from my illness but I still have to be really careful and I don’t seem to be able to build church back in. The few times I have been I have felt out of place, and overwhelmed. I chatted to a few people at the church about it but they just don’t get it. I find any kind of service is far too much of an energy drain. So much of my life feels focused on survival that I find it hard to connect with the services and it all just reminds me of who I was before, and everything I lost
I don’t know if I will ever be able to go back, have been trying smaller churches and less busy spaces, but I still struggle and, as my only way to connect with God was through doing stuff, its hard to reconstruct a relationship with him on new terms.
But your story gives me hope that maybe there is a way back. Someday.
I have taken a long break from my blog and am only just getting to a bunch of comments now. My goodness, it’s tough to feel connected at church when you can’t contribute in the usual ways. I’m sorry to hear that you have been experiencing a similar struggle to the one I had. Things have improved for me greatly in the past couple of years when it comes to feeling a sense of belonging at church. I’m praying now that you will feel a sense of comfort and that God will help you to persevere. I’m hoping there will be a way back for you too, if it hasn’t happened already. Remember how long trees take to grow? Our progress and growth can feel minute and insignificant but every small step counts.