Interview about JHS, POTS and Church (Build a Bridge)

This interview is about JHS, POTS and church.
I hope you find it helpful, whether you’re a Christian living with POTS and/or JHS (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.

Introducing Ally!

Ally’s church story

Welcome to our Build a Bridge Interview Series, Ally!

Thanks so much for having me!

To start off, can you tell us a bit about your health conditions and how they impact your life?

I’ve had Dysautonomia/POTS and Joint Hypermobility Syndrome (JHS) for about four years now. They both impact my life greatly in just about every area possible. My POTS causes me to be nauseated most of the time and my JHS causes significant joint pain all over my body. Those symptoms (among others) limit my ability to do many things, even normal daily activities.

How do you manage schooling, with all that going on?

Well, I actually worked hard and graduated a few years early, so I’ve been able to take it easy and rest without having to worry about school for about a year now. While I was still in school though, it was tough, especially with the brain fog that made it extremely difficult to concentrate or remember things I had already learned. I’m so incredibly grateful that I was homeschooled. I couldn’t have done it otherwise.

Ooh! You’re officially the second person I’ve met who’s been homeschooled. It’s not as common here, in Australia, as it is in America. What a fantastic set-up that must have been for your situation!

It was! Because I was homeschooled, I was able to work at a pace that my illnesses allowed and rest when I needed to.

I applaud your mum for having the commitment to homeschool you — I certainly wouldn’t have the stamina to do it!

Yes, I’m so grateful that she chose to homeschool me! She’s a great teacher and she always made learning fun.

Now, let’s move on to our church questions. Could you tell us what your church involvement was like before you got sick?

I’ve attended church my entire life and have been involved in church events for as long as I can remember. In the years leading up to my diagnoses, I not only attended but also served in several capacities.

Every week I played guitar, led worship, and provided childcare at our small group. I served every other week in our church office and bookstore. I was active in my youth group and able to go to camps and events to help me grow in my faith. I also sang with the youth worship team every other week. I was also able to be totally engaged during sermons on Sunday mornings, taking pages and pages of notes.

My goodness, your church must have really felt your absence when your health went downhill! The leaders must have been asking God, “Why her?? She was doing so much!” (Laughs) I guess it must have been an even harder adjustment for you, though. How does it feel, having lost that ability to actively serve at church like you used to do?

Yeah, it is a very difficult thing to go through. At times, I feel somewhat worthless because I can’t serve Jesus in many of the ways I used to. I’ve had to learn to rest in the grace of God that persists even when I can’t do “big things” for Him.

Even though things have changed a lot and the way I participate within my church body looks different now, I am so thankful to God for the years I was able to be so heavily involved.

What was the hardest thing about church in the early days of your illness?

The hardest part about church when my symptoms first showed up had to do with my “fear of man”. I am definitely a people pleaser. If I’m not careful, the opinions of others can easily become an idol.

Could you quickly explain what you mean by an idol? I’m gathering you aren’t talking about the statues people worship in other religions!

(Laughs.) No, I’m not talking about statues. An idol is anything that we value more than God. We can make anything into an idol, even good things. So when I say that I’m idolizing the opinions of others, I mean that I am valuing them more than God. When I value something more than God, I am essentially worshiping it. While we no longer serve gods of stone or wood, we can turn anything into a spiritual idol if we aren’t careful.

OK, glad we got that cleared up! So, you were saying that other people’s opinions about you can easily become an idol…

Yeah. So, I asked my friends and church family to pray for me as I dealt with the unexplained symptoms and tried to figure out what health problems were causing them. Week after week they would ask if I had figured out what was wrong with me or if I felt better. I hadn’t really found answers and my symptoms were progressively getting worse, but I didn’t want to disappoint everyone when they were praying for me. I generally told them I was okay, but okay is pretty vague and can cover a large range of feelings. I really struggled for quite a while to find the appropriate balance with which to respond to their questions.

I can understand that. It is an awkward thing to talk about, when you’re getting worse instead of better, and people’s prayers for healing don’t seem to have been answered with the Yes they were all hoping and believing for. How did you come to terms with that awkwardness?

After a while, I realized that my holding back from telling the complete truth about how I’d been doing was a result of fearing people’s opinions. I would never have said it aloud, but I thought that if I was honest about my symptoms getting worse instead of better, I would disappoint people. My fear of what people thought of me demonstrated that I was not thinking the best about those around me. I wasn’t accepting that people would still care and love me even if I continued getting sicker and sicker. In that way I was being unloving toward them.

What an interesting way to look at it! I’ve never thought of it from that angle before — that we’re actually not acting in a loving way when we don’t trust our church family to love us just as we are. I guess sometimes people don’t in fact accept us just as we are… but to assume they won’t accept us before even giving them a chance. Is that what you’re talking about? Have I understood your train of thought?

Yes, that’s exactly what I meant. We have to be careful not to assume the worst in others.

So, how do you feel these experiences have helped you to grow in your relationship with God?

Since then, God has continued to teach me to trust Him with my relationships. I’m learning to be honest about what I’m going through no matter how people respond. I believe that I’m weak so I can demonstrate God’s power to others. Being open about my weakness can bring Him more glory as I show others how God is at work in my suffering.

It seems you’ve learnt a lot over the past few years. It’s really encouraging to see that your trust in God has increased over this time. So, now that people at church know your illnesses are chronic and require ongoing management, how does church look for you these days? Can you describe a typical church service?

Some of the ways my involvement in church has changed would not be that obvious to the casual observer. I’m still able to attend Sunday morning services most weeks. What others cannot see is that my ability to participate to the same extent that I was able to pre-chronic illness has decreased quite significantly.

I still sit and listen to the sermon, but it’s a battle every second to concentrate on the truth being proclaimed and not be distracted by the pain. My frequent brain fog makes it very hard to understand thoughts and string sentences together in a coherent way. My blurred vision makes it difficult to read the outline or follow along in my Bible when everyone else is reading.

Sitting still for an hour makes the joint pain in my whole body flare up which distracts me as well. I can’t take notes anymore because the pain in my hand and wrist is so bad. I would have never thought that there would come a time when my sickness and pain would make it necessary to beg God for the strength to make it through a single sermon! All of this has really humbled me and reminds me of my dependence upon God.

I have to be honest: I’m a bit envious of your amazing attitude!! (Laughs) Many people who aren’t chronically ill struggle to sit through a sermon, yet here you are wishing you could take more notes! Jokes aside, I am blown away by the maturity God has given you at such a young age, and by the hunger you have for him. It is sad to hear about your constant, disabling pain. Thank you for opening up to us about your struggles. So, if the sermon is a strain, how do you manage after the service? Are you able to hang around for a chat?

After the sermon is over I walk around a little to relieve some of the pain in my joints from sitting still. I talk to a few friends, but then usually need to sit down on one of the couches in the lobby until it’s time to leave. When I get home I have to rest most of the day to be able to make it to youth group Sunday evenings.

Attending church when you know how much pain it will cause mustn’t be easy. Serving on a Sunday would be out of the question now, then, I imagine?

My invisible illnesses have definitely changed the ways and frequency I’m able to serve my church body. I still serve, but it looks much different now. For example, at our weekly Bible studies I’m no longer able to play guitar and lead worship every week because of the severe pain in my right arm.

I also have to pace myself and strictly limit the amount of activity I do before singing on the worship team at my church. If I am singing on a Sunday night I have to rest most of the day Saturday in order to prepare myself. I still help out at my church’s bookstore from time to time, but I’m not able to come in as frequently as I once was.

I see… So you can manage your timetable to a certain extent, in preparation for church events.

That’s right.

Sounds like a full-time job, managing these illnesses of yours!

Yep! Managing my illnesses certainly takes a lot of effort. Not all the change has been negative though. As I have experienced daily suffering myself, I have become more aware of those in my church body who are suffering as well. God has certainly grown compassion in me and given me a heart to seek out those going through trials.

That’s a wonderful outcome. I’ve noticed that in my own life, too. It’s like we have a special radar for people who are suffering, once we’ve been there ourselves. And that’s a ministry in itself, isn’t it?

That’s right! It’s so amazing how God can take a horrible thing like suffering and bring good out of it! Because we have received comfort from God we’re able to share it with others. Thank you for doing that through your blog!

Aww, you’re too kind! (Laughs.) Now, I’m interested to hear how your church deals with the issues of illness and grief. Has the “culture” at your church helped or hindered in your chronic illness journey? 

I am extremely blessed to belong to an amazing church body. My church is very big into biblical counseling and equipping everyday Christians to be able to reach out to those who are struggling. Because of that emphasis, there’s a sense of openness that wouldn’t otherwise be there. I never feel like I will be looked down upon or judged because of my illness.

That’s a relief! Many chronically ill people do feel judged at church, when healing doesn’t come…

Yes, I feel for everyone who has felt judged by their church because their illness. That must be terribly difficult. While there are not a lot of things specifically tailored toward chronic illness sufferers at my church, suffering is a topic regularly addressed from the pulpit. Also, because we are encouraged to open up the Bible for ourselves, and reach out to those around us, I never feel like I have to hide what I’m going through.

Now, could you tell us what have been the most helpful things your church has done, to help you adjust to your “new life” after diagnosis?

The most helpful things my church has done for me are the simple things.

1. Truly caring for me: Listening compassionately as I talk about my latest health struggle or different treatments I’m trying is one of the most important things people do for me. I greatly appreciate having people listen and show interest in what I’m going through as I explain my struggles to them.
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2. Praying and texting: The absolute best thing my church family does for me is praying. On days when I’m having stressful medical tests, appointments, or procedures, I get bombarded with texts full of compassion, scripture, and reminders that I’m being prayed for.
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3. Remembering important dates: The fact that they don’t only pray when I first ask them to, but remember to lift me up on the specific dates of my appointments means so much. There’s something especially uplifting about somebody taking the time to not only pray, but also text you to let you know they’re praying for you as well!
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4. Accepting my limitations: Another thing I’m so grateful for is how understanding people have been about the limitations I have now due to my medical conditions. When I have to tell people I’m not feeling well enough to serve that day, they are completely understanding and compassionate. Their gracious attitude is such a blessing.
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5. “Seeing” my invisible illness: The final thing I want to mention that my church family does well is remembering I am sick. Because I have an “invisible illness”, I look perfectly normal and some people forget that there is anything wrong with me. When most of my friends at church see me they ask how I’m doing and really want to know. They let me know that they are walking with me as I journey through life with chronic illnesses. They could forget all about my struggles because from the outside they aren’t very obvious, but they choose to remember and care.
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   The simple texts asking how I’m feeling or asking how my symptoms have been throughout the week may seem small, but to me they’re huge demonstrations of the love and compassion of Jesus. My church body isn’t perfect, but God has really blessed me with a wonderful church family.

Your church sounds awesome! I want to go there!! Pity I’m on a different continent. Finally, I’m interested to hear about your struggle to find your “new normal” at church? Do you have any coping tips that might help other people going through similar hardships?

One thing I’ve learned is to respond graciously to people who don’t understand what I am going through. Different people at my church have said things to me that have made me feel misunderstood and sad. Some examples are; “Are you better yet?” or “I wish I were sick like you so I didn’t have to go to work.” My illnesses are chronic so of course I’m not better, and I wish I were healthy enough to have a job.

In these situations, I have to choose to respond graciously and not be bitter towards people for misunderstanding what I’m going through. They have never been chronically ill so they can’t possibly know how hard it is. Jesus has demonstrated so much grace toward me and He is teaching me to reflect Him in my relationships.

Mmm… Yes. It can be tough when people say flippant or dismissive comments, can’t it? I like the way you’ve managed it: putting yourself in their shoes and extending grace to them. Was there another tip you were going to mention?

Yep, there was… The second thing I have learned is that missing out on events my healthier brothers and sisters are able to do can be an opportunity. Instead of wallowing in self-pity and sulking because I have to stay home, I can pray for the event and all the people attending.

I have plenty of time where I’m lying in bed too sick to do much and I can choose to use that time productively. If I miss out on something I can pray longer and more intentionally than I could if I were at the event myself. Yes, it is difficult not being able to do all of the things or attend all of the events others can, but God is teaching me to make the most of those times.

Gee, it can be heartbreaking, can’t it, to miss out on events you’d love to be able to attend. That really gets me down, too. You wrote a blog post about that, didn’t you?

Yes! It’s called Missing out When You Have a Chronic Illness

Are there any other coping tips you wanted to share?

The final thought I want to end this interview with is this: How you participate in church is not what makes you acceptable in God’s eyes. I have to remind myself of this each and every day.

Yes, me too!

Those of us suffering with chronic illness are not able to serve in the same ways as we previously were. We may not be able to focus as well on sermons because of our pain or we may not be physically able to make it to service every week.

Our salvation was not based on anything we did and neither is our acceptance in God’s eyes! He loves us even though we cannot serve Him how others do.

May we learn to rest in His acceptance and praise Him for His unconditional love. None of these lessons are easy but they are very necessary. No matter what our experiences with church may be, I pray that we will all strive to show grace and forgiveness to our local bodies.

We may not be loved and cared for the way we would like, but God still calls us to forgive and love our brothers and sisters in Christ. Let us remember Jesus’ example of unconditional love every day.

Wow, what words of God-given wisdom. Ally, thank you so much for talking to us today about your experience with JHS, POTS and church. I’m sure our readers will be feeling encouraged and challenged by your thoughtful responses. Before we say goodbye, are there any links you’d like to share with us?

Yes, here are some of my favourite links:

• Info about POTS
• Great infographic about POTS
• Article explaining JHS
• A great article about our perception of chronic illness
• A great article about suffering

And here’s the link to Ally’s blog, Chronically Constant. She writes with maturity and wisdom beyond her years! Ally, thank you again for sharing your thoughts with us today. I’ve really enjoyed meeting you, and I pray that God will use your words to challenge and inspire many people.

Coming up next…

Hosea will be telling his church story next. Can’t wait to hear what he has to share!

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