Invisible Illness and The Church – What Lies Beneath
My heart cracked into a million tiny fragments as I cradled my nine-year- old under my arm. I
desperately wanted to tell her that it gets better, but my own experience tells me otherwise. She wasn’t sobbing because her body was in pain, even though it was. She wasn’t bemoaning her body’s lack of stamina, even though it does. No, this discussion was about something almost as painful as the illness itself; the isolation. Being surrounded by people who regard and love you, yet still feeling utterly alone.
After years of watching my daughter’s health deteriorate with similar symptoms to my own chronic illness, I listened as she lamented her ability to make friends at her new school. It wasn’t because the kids didn’t like her or were unfriendly. Rather, she was so exhausted come recess and lunchtime that she didn’t feel like running around and playing the active games that her peers enjoy, leaving her on the sidelines as a rather lonely group of one.
In that moment I searched for an encouraging word but I came up empty, for it was in that same moment I realised my own life reflected my daughter’s.
I do have some amazing friends who have loved me and served me generously in my darkest
seasons, but my deteriorating health has enormously impacted my ability to spend time in
fellowship with friends and my church, resulting in my circle of interaction becoming very, very
For a Chronic Illness (CI) Sufferer, having virtually no facetime while often housebound is difficult. I believe one of the largest contributors to this experience of isolation is the wide and varied perceptions of moderate to high functioning CI sufferers.
I could wax indignant about dealing with the broader community’s judgement of CI sufferers. It’s not easy being labelled as disinterested, non-contributors to school communities because we can’t volunteer for working bees and fundraisers, or being abused for accessing government support when we look and sound like everybody else. (Don’t even get me started on the hate campaigns against seemingly ‘able-bodied’ people using disability parking permits, wheelchairs and lifts!)
But what about our churches?
I’d like to think our churches are a refuge for such people. After all, we are there to serve and love without prejudice, aren’t we? Following the example of Christ, we are to welcome people as they are and to recognise that each person has an individual capacity to serve.
I know many churches have a sensitivity and understanding for their silent illness sufferers, but it can still be hard to know how to serve them well when only a small glimpse of their suffering might be apparent (or perhaps none at all).
So, let me help you delve beneath the surface here a little. I’d like to deal with three of the most difficult misconceptions about silent illness I have experienced with churches, and urge you to prayerfully consider these in the life of your own church.
#1 Church Attendance Isn’t Always The Answer
A few months ago I caught up with a dear friend of mine who has two young children with extremely intensive special needs. Getting to church on a Sunday is not practical because her husband is often working, and her children are very rowdy and disruptive as a result of their conditions. Church attendance for her holds only stress and frustration as she spends the entire service running after her kids or taking them outside to avoid disruption. Yet, she is continually urged by well-meaning folk to attend church.
I must admit, I saw red when I heard this. The understanding and help my friend needed was not a guilt-trip (however well-intended) about not attending church. She needed somebody to recognise her circumstance for what it was. She needed some sacrificial love and an offer to watch her children for a few hours at home so she could attend church. She needed somebody to say Wonderful mamma, God sees your struggle and understands. Can we come and fellowship with you in your home some time?
The same rings true for many CI and silent illness sufferers. Getting to church or study group can be a monster task. If we somehow manage to make it along, we’re possibly in so much pain that we can’t be mentally present. The exertion from the outing alone may make us housebound for the following three days as we recover. The trouble is, none of this is visible on the outside. What looks like a reason to rejoice (Yes, she made it to church today!), may very well be reason for the opposite.
Attending church out of a sense of obligation or guilt and at the cost of physical or mental wellbeing is a terrible reason to be there.
We need to stop insisting that church attendance is the best thing for everyone. Instead, let’s be more like Jesus and meet people where they’re at.
#2 God Is Not Taking A Back Seat In Our Lives Because We Don’t Join Your Roster
I’ve lost track of the number of sermons I’ve heard throughout my lifetime, imploring us to consider our priorities and to give sacrificially of our time, energy and money to the church. Without exception, this has been in the context of ‘corporate Church’ urging for rosters to be filled, prayer meetings to be attended, outreach events to be manned and money to be raised to pay the utilities.
I’m not against rosters, outreach and fundraising. What is difficult is the judgement that comes with having to repeatedly decline commitments. We’re viewed as Christians who have our priorities are out of whack. Clearly, God has become less important in our lives because we can’t serve cookies after church.
I believe most young Christian families wrestle with the church/family-time balance at some point. But for those with invisible illness and no apparent reason why we can’t be involved (after all, we stay home all day and our kids are old enough to look after themselves), it is almost impossible to escape the guilt that comes from saying ‘no’. Our spouses are also judged in the same vein, even more so because they aren’t the ones who are actually sick! (Never mind the fact they are probably working overtime at home to pick up the pieces.)
Believe me, we know how it looks. We want to serve and to be involved, but being chronically ill means tough choices are made on a daily basis. Rest assured churches, you are not the only ones we say ‘no’ to.
Instead, let me tell you what I’d love to see replace the guilt trip. I’d love for study groups to sacrifice one or two meetings a month to hold a working bee at somebody’s house. (I have a study group who does this, and I LOVE them for it.) I’d like to see churches occasionally replace one of their services with an inreach day so we can flood the homes of people who need some facetime or help around the house. I’d love to see a budget line at the AGM showing a dedicated account for giving money towards those in the church with genuine need (even if it is invisible) and a tithe from the weekly offertory going to that account.
I’d love to see the guilt trip replaced with sacrificial love.
#3 We Contribute To The Church In Ways You Cannot See
Being sick is hard work. Asides from the activities of day-to- day life, there are doctor’s appointments to attend, support groups to visit with, medications to be administered, research to read and judgements to weather. These activities bring us into contact with a whole world of people who often have nothing to do with the church. Each time we meet with a doctor or a support group we have an opportunity to demonstrate our faith in action in the face of suffering and hardship. It’s a powerful witness and one that many of us do not take lightly, even if we struggle and wrestle with our faith along the way.
For a CI sufferer, this Christian witness almost always comes at the cost of precious little energy. Like the widow who gave two small copper coins to the temple treasury (Mark 12:41-44), this offering is all the more precious because it comes from a poverty of health.
Oh church, let us not condemn those who have nothing left to give come Sunday morning! Instead, let us recognise the sacrificial offerings given by those who bear witness to their faith in the face of abundant suffering and bless them richly in return. Want to find some practical ways to help CI Sufferers in your church? Check out