Today we’re meeting Carole. She’s 69 years old and has a bunch of chronic illnesses that require daily management.
She first got sick at the age of 31, which means she has been unwell for nearly 40 years. Can you imagine that?!
Carole, welcome to our Build a Bridge Interview Series! It’s an honour to have you with us today.
Thanks for inviting me!
Before I ask my first question, I just had to ask about the nickname you use on your website. What led you to choose the name Connected Carole? It has a nice ring to it.
Toward the beginning of the internet age, a group of us pastors’ wives formed an e-group. As we lived in a small town and with my illnesses, I felt isolated. These women kept me connected to people.
Yes, the internet is a real godsend for those of us who are socially isolated, isn’t it?
Indeed! After this e-group disbanded, I so missed relationships with other women. That type of connection was intended to be a primary reason for my website, but it hasn’t worked as well as I’d hoped. I have a small Facebook support group called “Our Connections” as well. It’s a “closed group”, which means all the discussions are private and won’t show up on friends’ newsfeeds. So, one meaning of Connected Carole concerns connecting with people. But, a second meaning involves the connections I have with God; they are the bedrock of my life. So… Connected Carole: connected to God; connected to people.
Ah, I see… I’m guessing you’re quite a bit more internet savvy than some of your contemporaries? That’s not meant to sound ageist; I’m just going off my parents and in-laws. They’re all accomplished people in their respective fields, but they would have absolutely no idea how to create a website!!
The computer has been my link to the world; I even call my laptop “Expanded World.” At one church Joe pastored years ago, I got thrown in at the deep end: the secretary left without warning and I had to do the bulletin. I called my daughter-in-law for help! I fell in love with computers and taught myself through the years. (Of course, that leaves gaps.) Two years ago, I took a free online course from my library that taught the basics of website design, then started the site that I’d felt God calling me to do for four years.
For someone who’s been very unwell for four decades, you certainly haven’t lost your spark — there’s hope for the rest of us who are facing future decades of illness!! Speaking of illness, could you tell us about your chronic illnesses?
I suffer from Dystonia (2005), Post-Polio Syndrome (1984) and Sjogren’s Syndrome (2009). These are my three major illnesses, all of which interact negatively with each other causing multiple other problems. My first injury happened at age 31, 1978. Since then, things have been unpredictable and slowly progressive.
Gee, that’s a long time to have lived with chronic illness. And it’s not just one, it’s several! I’m so glad you’re sharing your story with us today – you must be a chronic illness guru by now!!! (Laughs.)
Too much experience, for sure! One doctor told my husband, “She knows a lot about medicine—just enough to get in trouble, not enough to get out of it.” (Laughs.)
And how long have you been a Christian for?
My family took my brothers and me to church with them from the time we each were born. I accepted Jesus as my Savior early, at age 6, and have remained active in church all my life.
Wow, I hope my kids can have a testimony like that someday… My older child is 6 years old and he loves God. It’s hard to imagine him, in 63 years’, time saying he still believes! Can you tell us a bit about your involvement in church pre-illness?
My parents took us to church from infancy, so I grew up going to Sunday School, church worship, Vacation Bible Schools, and youth group. My parents were both teachers in church, and my dad was a preacher for a few years. As a teen, I began helping teachers in various programs. My husband, Joe, and I continued these traditions in our own family, attending Sunday School, worship, prayer meetings and other occasional meetings. We both taught Sunday School. We did janitor work. I was a church clerk in several churches. Joe experienced a call to be a pastor, preparing by completing college and Seminary. He was called to his first church in 1980 – two years after my first injury.
When it came to church, what was the hardest thing for you in the early years of your illness?
My first disabling event happened while Joe was at Seminary. The church we attended was 45 miles away. We were active, both teaching there. After my injury, I was unable to ride in a car for months, so Joe and the boys attended without me.
Some people working in Christian ministry might joke that they’d love to have an extended break from church! And I imagine there are some mums out there who’d enjoy a few hours to themselves each Sunday morning. But I’m guessing it wasn’t just a nice holiday for you… How did you feel about that about it at the time?
That sort of saying greatly frustrates me! A break MIGHT be nice if it was your choice. But I had no choice. And I missed, and still miss, being actively involved in church and ministry. And a break from my boys? I took my breaks at night. I didn’t need other breaks. I loved being with them; maybe more than most because I couldn’t do the things with them I wished I could.
I can relate to that. I’ve carried an enormous amount of grief as well, due to missing out on special times with my kids… Sorry, I interrupted — please continue.
As to not getting to go to church itself, that was very hard! I missed the time with other Christians! I missed the ministry! Two years later, after Joe graduated and we moved to his first church, I was still unable to participate very much, although I did teach and attend worship and prayer meetings. By then, I could sit less than two hours. I missed being more active in church work.
What a journey… That must have been a great source of grief for you…
It has… A few months after my first diagnosis when the doctor told me it would last all my life (barring a miracle of God), I went outside, found a tree to sit under, and cried. Grieving, though, is an ongoing process. When I think about what I can no longer do, it’s very saddening.
Yes, it is saddening. Your illnesses have taken away some things that were very precious to you… Thank you for your honesty. I know it’s not always easy to talk openly about grief… You mentioned earlier that your illnesses are progressive. Would you mind explaining what that means?
Joe describes my physical life as an unstable chemical. Quite volatile. Good news, sometimes my symptoms aren’t too bad. Bad news, other times they’re awful. Over time, though, they’re on a downhill slide. The weakness (unable to be reversed by exercise) is much worse than 40 years ago. New symptoms have appeared through the years. Since the Sjogren’s is extra-glandular, it can affect any other parts of the body, and in the last few years it has spread. The Dystonia is also worsening. So, I do not know what the future holds—nor even what the next day will be like.
Gee, how sobering… It truly is a case of taking one day at a time, hey?… So, your involvement at church must have changed quite a bit over the years, then, as your invisible disabilities increased?
Yes, it has… Before my first injuries in 1978, I taught, did other jobs, attended services and conferences. Those first two years were the worst, involving several months of total incapacitation. By 1980, my participation was limited as my ability to sit was only 1-2 hours, dwindling down over the years. As fatiguability can cause my muscles to quit working, I have to be very careful about activity. I did teach off-and-on for years until I could no longer do the prep work, voice issues made talking difficult, and memory concerns were a problem. Traveling to conferences became difficult, so that, too, disappeared over the years. I worked in the office some at various churches. I edited and produced our churches’ newsletters. At this point, all I can do is attend worship, pray at home, and occasionally go visiting with Joe.
Can you describe what a typical church service is like for you?
A typical church service is about 1 1/4 – 1 1/2 hours including 20-25 minutes of singing. That amount of time strains my ability to sit which causes problems if the service runs long. I don’t stand at all for the singing. One frustrating problem is I can’t see the words on the screens. I use a scooter now, which provides fairly comfortable seating. I used to get up and talk to people, using a cane, before and after the service; but standing poses problems, so I don’t often do that now. If I get surprised by an especially bad day, I may have to leave early.
Hopefully there aren’t too many of those…
Thankfully, I rarely have to leave early. Usually, I can estimate my strength well enough to stay home if necessary. Occasionally, I do get surprised.
Now, you and your husband have been involved with a few different churches over the years… I’m intrigued to hear more about your experiences! For example, how have the different churches dealt with the issues of illness and grief? Have the people been helpful, or not? Has the “culture” at your churches helped or hindered in your chronic illness journey?
Joe’s first church, 14 years’ duration, was great about my issues. They accepted me as I was. They prayed — for me to endure and overcome, not just for healing. They didn’t expect me to be healed just because they prayed. They asked me how I felt — and listened to the answer. They believed me when I said I couldn’t do something — no judgment. They were great about practical help. Others who suffered also received similar treatment.
I’m glad to hear there was one church that provided you with the encouragement you needed! How about the others?
Unfortunately, my experiences differed in later churches. Sometimes, people would want to pray for my healing, a good thing. Our translation (right or wrong), ”we must never have done that.” I often did not feel accepted, neither did I feel judged, though. When asking for prayer for a difficult time, what I often received was prayer for healing as if I just didn’t want to get well. When what you want is a special gift from God to get through the next day, it’s disappointing when the person only prays for healing. God was gracious, and there were usually helpful people in each church. When the people were accepting and helpful, the journey was eased. When they were not, I just journeyed by personally leaning on God and ignoring the lack of acceptance and ministry.
I’m sorry to hear about the lonely experiences you’ve had at your more recent churches… I’m interested to hear: What are the things you wish churches would do, to better support people who suffer from an invisible disability?
- First and foremost, listen to us and believe what we say.
- Acknowledge our existence.
- Show your care by accepting our answers when we do share.
- When you ask how we feel, and we answer, “Pretty good,” don’t expect us to be all well the next time you see us. If we answer, “Awful,” accept that. (One good answers I received was “I hope God gives you a special blessing, then, during the service.” Uplifting.) If you’re a good friend, or would like to be, considerately inquire further.
- When you want to pray, ask us what our needs are.
- Let us know by email, texts, phone calls, you are praying.
- Get in touch with us just to say “I care.”
- Offer practical help, if you’re able, especially if our caregivers are ill.
- Seek us out during the week, not just when we’re at church.
Yep, I’m nodding enthusiastically at these suggestions. I’m sure our chronically ill readers will be doing the same! Finally, could you talk a bit about your struggle to participate in church? I’m keen to hear some practical tips that might help our readers who are going through similar hardships.
As the years wore on and I didn’t get better, the struggle changed to “How do I live now?” God, working even through Christians who were less than helpful, eventually led me to acceptance. I never gave up on God or His church. Here are some things to consider:
- First, I encourage you to strengthen your personal relationship with God. If your church or friends aren’t able to help, try to find studies to do on your own. Rest Ministries and Joni and Friends are good sources to check. Listen to, or sing, favorite Christian songs. Meditate on Scripture, especially verses dealing with God’s care and presence. Read good books.
- Talk to the leadership at your church. Let them know you have a problem. How wonderful if good things happen from that point on.
- If the leadership knows nothing about invisible illness, see if they’re open to education about the subject. If they aren’t, or if all they’ll do is pray and EXPECT healing – especially if they blame you and a lack of faith – consider finding a church more open to acceptance of ongoing illnesses.
- Be sure your friends and/or small group realizes you have a problem and aren’t able to do what you used to.
- Share prayer requests as appropriate.
- Be accepting of those who aren’t accepting of you. Show the grace you wish they’d show you.
- Above all, enjoy being with God’s people as often as possible. Don’t give up on them.
I can definitely relate to those points. I’m sure they’ll strike a chord with many of our readers as well. Thank you for your wisdom- and grace-filled advice. Before we go, are there any links you can direct us toward, if we want to learn more?
Here are some sites about my health conditions:
- Dystonia: https://www.dystonia-foundation.org/what-is-dystonia
- Sjogren’s: https://www.sjogrens.org/home/about-sjogrens
- Post-Polio Syndrome: http://www.post-polio.org/edu/pps.html
Here are some links to sites about living with disabilities, especially invisible ones.
- Rest Ministries: http://restministries.com/
- Joni and Friends: http://www.joniandfriends.org/
- IDA: https://invisibledisabilities.org/
I’d love to have you visit my site which is about navigating all these problems. It contains tips and suggestions for those with invisible disabilities, and information and helping ideas for those without. See www.navigatingthestorms.com
I second that! Carole’s articles are filled with practical tips. I’ve found particularly helpful the ones about how to relate to doctors. (We all know what a challenge that can be for people with invisible illnesses!) Carole writes with clarity, wisdom and humour. Carole, thank you so much for opening up to us today. I feel blown away by your depth of experience, and I’m so glad to have heard your story.
Thanks for having me! It’s been a pleasure.
That wraps it up for today. I encourage you to share Carole’s story on social media. Let’s get the word out! Together, we can raise awareness in the church about invisible illness!
Want to tell your story?
If you would like to contribute your own story to the Build a Bridge Interview Series, email me at firstname.lastname@example.org.
In 3-5 lines, tell me about (1) your invisible illness experience, (2) how long you’ve been a Christian, and (3) what types of things you’d like to share in your story. I’ll reply as promptly as I can to get our shared project started!