Finding Treasure in Chronic Illness

How Living with an Invisible Disability Changed My Relationship with God

Today is International IBD Awareness Day!

Inflammatory Bowel Disease is an incurable autoimmune condition where the immune system attacks the inner lining of the gut wall, creating painful ulcers, blood loss, chronic fatigue, joint pain and a whole host of other symptoms. The two most common types of IBD are called Crohn’s Disease and Ulcerative Colitis.

If you would like to find out more about my condition, you can visit The Crohn’s Colitis UK website.

Please note that this essay will mention some graphic medical details relating to the bowel.

Photo by Kinga Howard on Unsplash

It has been over four years since The Great Big Change.

In early 2020, when the world was in lockdown due to a global pandemic, I developed a kind of Inflammatory Bowel Disease called Ulcerative Colitis, which quite literally turned my life upside down. Then, when the country awakened from its slumber and people began reintegrating into each other's lives again, I remained housebound, often bedbound, crying most days in terrible pain. 

This was not how I had imagined my life to turn out. 

When my thirtieth birthday came and went, I realised it had become more normal than not to go for days without any human contact, except for on a screen. As is often the case when my mind is left alone for too long, things got existential. 

While I am very pleased to say that the disease is now only acting mildly, there have been times when the impact was severe, and today I would like to share some of my learnings from that season. 

I spent three years at the University of Cambridge, studying Theology, Religion and the Philosophy of Religion. There, I learned how to ask questions such as, ‘Who is God?’, ‘Who am I?’, and, ‘What does it mean to be human?’ But it wasn’t until I spent a further three years at the University of Chronic Illness that I started to discover some answers to these questions.

I have written in a previous post how, when Jesus entered the world stage, he did so as a direct confrontation to the cultural and ethical values that had been established by Rome. Historians such as Tom Holland argue that we are continuing to live in the reverberations of that disruption today. I argue that in the West, we live in a peculiar intermingling of what I call ‘kingdom culture,’ that is, the moral and ethical values established by Jesus and his followers, and ‘empire culture,’ the moral and ethical assumptions passed down by Rome. 

I have also bemoaned the negative effects of when empire culture infiltrates the church, which is sadly more common than most people realise. 

But where can the kingdom be found? Jesus describes it as a mustard seed, a lost coin, or treasure buried in a field. I believe I have caught a glimpse of the sparkle of this treasure, and it was not where I was expecting to find it. 

While empire culture tells me I can find divinity in grandiose settings with shiny conferences and celebrity leaders, experience has shown me that the kingdom can instead be found in the muck of life. Since then, I have been trying to disentangle the lies I inherited from empire values, from the kingdom truths that are actually preached by Jesus. 

Four years on, it feels appropriate to reflect on the things God has taught me through this experience. So, without further ado, here are five ways that living with a chronic illness has changed my walk with God: 

1. I have learned the reality of my fragility

Few experiences are more undignifying for a grown adult than to shit the bed. 

I mean this quite literally. When you lose control of your bowel, it feels as though you have returned to infancy. The first time it happened I was overwhelmed with shame. Why? Because these things happen to young children, not strong, independent, fully grown adult women.

To make matters worse, the combination of malnutrition from chronic diarrhoea with having your immune system regularly attack a major organ results in an overwhelming fatigue. This, along with chronic pain, leads to reduced mobility. During the depths of my worst ever flare-up, I remember being unable to dress myself, or even get myself in or out of a bath. The last time I had needed this kind of assistance was when I was a toddler. 

The experience of becoming like a child again revealed a few ugly things in my heart: 

First, I realised that I had a deep inborn hostility to anything ‘child-like’. Somewhere in my South African - Australian - Patriarchal upbringing I absorbed the idea that I had to project a sense of bravado to the world in order to be taken seriously. This is classic empire culture.

Yet Jesus says, ‘Let the little children come to me, and do not hinder them, for to such belongs the kingdom of God. Truly, I say to you, whoever does not receive the kingdom of God like a little child shall not enter it.’ (Luke 18:16-17). 

Second, as I tried to navigate a social life in a flux of good days and bad days, I realised that I was unable to bring myself to be ‘weak’ in front of my community. Paul says in 1 Corinthians 1:27, ‘God chose what is weak in the world to shame the strong.’ It seems that God likes to show off by using those whom society has underestimated. He doesn’t need us to only be present in the world on our good days. A healthy honesty about our bad days can in fact have its own paradoxical power. 

Third, the biggest challenge for me to mentally overcome was not the pain, but the loss of independence. Jesus says, ‘without me you can do nothing’ (John 15:4-5), which up until this point, I thought was an optional add-on for the super-spiritual. Having your autonomy removed against your will reveals that you were never really independent at all. When your physical capacity is reduced to this level, you realise that the very concept of self-sufficiency is a lie. 

Through this experience, I have realised that one can never truly be ‘free’ from the constraints of being in relationship with others. We are designed to love and be loved, and love hinges on vulnerability. If we spend our lives running away from vulnerability, we are really running away from what it means to be human. 

2. I have learned how to celebrate my limits

In the first year of being ill, my biggest achievement was to learn how to accept my limitations and listen to my body. Pete Scazzero often says, ‘the body is a major, not a minor prophet.’ 

Since reaching remission, I now have a new goal to aim for: to celebrate my limitations, not just accept them. 

Although my disease is currently inactive (long may that continue), I still have bouts of fatigue, which means I have to be very disciplined at pacing myself. When I overdo it, I have major energy crashes, which can result in being bed-bound for days. Sometimes I feel fine in the moment, and the crash happens later, which means that even when I feel well I need to walk at a slow pace and resist the urge to run around like a Duracell bunny. 

This in and of itself can be hard, but it also makes relationships with people complicated. I have learned that my acceptance of limited capacity can sometimes be offensive to others. Those who have not had a life-altering condition can struggle to understand how I am am able to be so ‘lazy’. They bust their guts working as hard as they can, yet this obnoxious millennial has the audacity to take regular breaks and believe that rest is a right, not a privilege! 

Here’s the kicker: I have never had a crash from doing something morally wrong or bad. I almost always overexert myself trying to serve God in some way. Learning to say no to good things has forced me to realise that I am not the saviour of the universe. Somebody else already has that job description. 

But, here is a beautiful thing: if God is infinite, then I don’t have to be.

3. I have learned where my identity comes from 

I come from a family of workaholics. In my upbringing, nothing mattered more than work. We were taught from a young age that Daddy’s career was more important than our needs, and that our achievements at school were what made the family proud. 

Primary school report cards and musical exam assessments were photocopied and circulated to even the most distant of relatives, so it was important to achieve the best possible grade so as not to be publicly embarrassed. 

I have an aunt who once told me in all seriousness that she believes the only regret she will ever have on her deathbed is that she didn’t work hard enough. She said this in front of one of her children. 

Work, productivity and achievement have been central to my identity all my life, and this has done violence to the image of God in me. 

I should say that I fully subscribe to the concept of good work as dignifying, and I believe that apathy can be very bad for the soul. However, I am increasingly aligning myself with the values of Catholic Social Teaching, which tell us that the economy must serve people, not the other way around. 

Productivity can be a great way to glorify God, however, in my upbringing it has been a family idol for many generations. Lying in bed for several months on end has forced me to smash that idol to pieces. 

When your identity is in work, and you suddenly can’t work, who are you really? Are you still of value and worth? This was a huge existential burden that God had to lift from my shoulders. It took a while, and it was not by my own efforts, but I can now safely say that I do not feel guilty when resting anymore. This is an enormous achievement, and I can’t imagine someone like me reaching this point by any other route.

4. I have learned who my friends are

It’s hard to write about this without sounding bitter and resentful, but the sad reality is that only a few friends stood by me during my most difficult flare ups. 

Although God has used my chronic illness to take me on a journey to re-evaluate my values and learn to celebrate weakness, not everybody around me has been on that same journey. As a result, I have had to let some friendships naturally die. 

Prior to being sick, I cultivated a public persona that made me appear to be smart, successful, confident, and independent. As a result, the people who naturally gravitated to me were those who valued the same things. They were either living similarly to me, or they wanted to. 

This meant that when everything fell apart and I needed my community to let me be weak for a while, the vast majority of my friends disappeared. Many could not cope with the idea of me falling apart because they needed me to carry on being strong (for them). 

I was not prepared for this.

A small minority of people were surprisingly hostile towards me in the early days of being ill. I was shouted at by three different people for not having enough faith to make myself well. For them, it was impossible to accept that some things in life are outside of our control. Moreover, they seemed unable to understand that this disease was far more inconvenient for me than it was for them!

Worse than this, a large majority of people who I thought were my friends wanted absolutely nothing to do with me. I had to come to terms with the reality that some people really only wanted me in their lives to be useful, interesting, or inspiring. When I needed help with picking up groceries, fetching medication, or even getting a lift to A&E, a surprising number of calls and texts went unanswered. 

It took a major chronic illness to reveal which friendships were one-sided, and, although it was painful at the time, I am now very grateful that these people faded out of my life. I am also enormously grateful for the tiny minority who drew near during this time. These sorts of friendships are incredibly special, and I don’t know where I would have been without them.¹

It turns out that weakness is divisive. Those who are unafraid of it come close, whereas those who are biased (or busy) stay clear.

Crises tend to reveal what was there all along.

5. I have learned to release control 

One of the most frustrating aspects of Inflammatory Bowel Disease is that it is known to fluctuate; one can have periods of remission and periods of ‘flare ups,’ and each cycle feels different to the one before. 

The disease itself is incurable, so you are always on medication and have some kind of limited capacity, but the fare-up / remission cycle means that you don’t really know what the future will look like. This makes short and long term planning almost impossible. I often have to explain to people that when I agree to a social event or to taking on a new work/volunteering responsibility, everything has to be pencilled in, and there is a chance I might have to cancel at the last minute.

Being dependable has been a core-value all of my life, so being forced into being ‘unreliable’ has been heart-breaking at times. To make matters worse, people usually only see me on ‘good’ days because those are the times when I am able to leave the house! It can be difficult to believe that the bad days happen if you’ve never witnessed one, which is why diseases like this are colloquially known as ‘invisible disabilities.’

Some people are understanding; others are not. Little phrases often slip out that reveal what people really think. I am often accused of ‘deciding’ I am sick or ‘choosing’ to be ill at times that are inconvenient to others. Again, the vast majority of able-bodied people live under the illusion that everything in life - even illness - is somehow within one’s control.

Nevertheless, these fluctuations have forced me to surrender to the providence of God. I am not, as Nicky Gumble says, ‘the general manager of the universe.’ 

This last lesson is still a work in progress, but I have no doubt that ‘he who began a good work in [me] will bring it to completion’ (Phil 1:6).  Although I do not believe that God made me sick in order to teach me a lesson, I do believe that ‘what [the enemy] meant for evil, God meant for good’ (Gen 50:20). 

I now live in a peculiar paradox, where I genuinely would not wish this disease upon my worst enemy, but I am also enormously grateful that it happened. 

I am not who I was before, and this is no bad thing. 

I believe that people with disabilities and chronic illnesses are a tremendous gift to the church. Most Christians I know struggle with their identity, some kind of workaholicism, superficial relationships, and a lack of real trust in God.

People who have been stripped of their independence have been forced to deal with these issues, and often come out the other side like a refined piece of silver. Sure, we are less productive, but many of us have experienced the kingdom in deep ways, and have plenty of wisdom to share as a result.

The question is, will the church listen? Does she want to? Does she know how to slow down and pay attention to those who appear to be useless?

We have a lot to say, if you’d like to hear it.

Until next time, 

S

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A Caveat:

I should mention that it is much easier to reflect like this when the disease is in remission. A more honest account on what my spirituality looks like in the middle of a flare can be found on my old blog archive: Pray a Sh*t Prayer. 

1. I have another essay on this brewing called, The Doubter, The Socialist and The Lesbian. You can have it delivered straight to your inbox if you hit that subscribe button!