In Depth  |  

Love in a time of chronic fatigue

Leigh Hatcher describes going to church during his time with chronic fatigue syndrome (CFS) like running “a gauntlet of well-meaning people”.

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Everyone was desperate to hear good news. “ ‘You look good!’ they would say, when in reality I felt crap.”

An estimated 0.2 to 2.6 per cent of people around the world have CFS or myalgic encephalomyelitis (ME). Characterised by profound fatigue, muscle and joint pain, and impaired memory and concentration, CFS is a highly debilitating but mysterious illness.

For a long time there was a great deal of scepticism about CFS among the medical community. Unfortunately, misunderstanding still exists in some parts of the profession and society more generally, the Church notwithstanding.

Hatcher was a TV journalist with Channel 7 in 1998 when he found himself bedridden and suffering extreme fatigue following a bout of viral hepatitis. After the virus passed, he remained fatigued and unwell for two-and-a-half years.

“If usefulness is the benchmark, it’ll be hard for people with long-term illness to feel part of church.” – Leigh Hatcher

One thing he noticed is that the fast-paced, skills-based life of most modern churches is at odds with the chronic fatigue sufferer. Their focus on pragmatism, growth and expansion drives a wedge which Leigh describes as the difference between loving people for what they can contribute to the “enterprise” (numbers, growth programmes) and loving people for who they are: a person made in God’s image.

“If usefulness is the benchmark, it’ll be hard for people with long-term illness to feel part of church.”

The difficult thing about chronic fatigue is that sufferers appear “normal”. There are no obvious visible signs of illness: they’ve got all their hair and limbs, they’re not in a wheelchair, there aren’t any bandages to be seen. For all intents and purposes they look healthy, and so expectations can be high.

Danielle Martin is a talented flautist, who lives in Geelong with her husband Ben and their dog Wolfie. Her journey with CFS began when she unknowingly contracted glandular fever while in France as a 17-year-old. Studying full-time music at the Victorian College of the Arts High School she returned to start Year 12, but felt lethargic, heavy and depressed.

She pushed through her final year of school and began studying music performance at university, but soon contracted glandular fever for a second time, as well as bronchitis. The feeling of having glandular fever has never left her. She has a persistent sore throat and feels like a wreck most of the time. Anxiety, OCD and bouts of depression have come and gone throughout her life and, more recently, insomnia. Since 2010 she’s been unable to work or study full-time, and has been on a quest for wellness – spiritual, mental and physical.

Something as simple as meeting new people at church and trying to explain who she is can be stressful.

“People always ask ‘what do you do?’ … It can be really exhausting sharing my story with new people every week.”

Church culture is all about being friendly and welcoming, and so the question “How are you?” is stock standard, and totally innocuous … if you’re well.

“It’s such a hard environment to tell people how you actually are,” says Danielle. “No one wants to hear that your week was really hard again, for the fifth year in a row. People feel like it should be over already.”

Emma Collins is a mid-20s theological student living in Melbourne. She first became aware something wasn’t right when she went from running nearly every day to not being able to stand up in PE class in Year 9. It took around two years to be diagnosed with CFS, but when she was, she just wanted to ignore it. “I didn’t want to stop, because I thought if I stopped, I wouldn’t be able to start again.”

Pushing through meant finishing high school and starting uni. But it came at a cost. Towards the end of her first year she had a mental breakdown and developed an anxiety disorder. Still, she kept pushing on at uni, and even went on to do honours and then a master’s, all the while battling extreme fatigue and pain.

A highly academic and gifted person, Emma didn’t want to stop studying but was forced to in 2013 because she found she couldn’t walk outside the house and was in huge amounts of pain.

“I was incredibly angry with God,” she says. Worst of all, she started feeling her mind lose its ability to concentrate and remember things. “It was scary. I felt like someone with dementia.”

Emma, like Danielle and Leigh, has had mixed experiences at church. “The things people say can be really unhelpful, like, ‘You look so well,’ or ‘You’re too young to be sick,’ or ‘But you manage to do all these things – it can’t be that bad?’

“My friends’ biggest problem might be when they have kids, but for me I might not have the energy to even survive being married or having kids at all. It just makes you feel incredibly alienated because your life is so different.” – Emma Collins

“I am really lucky that I’m not housebound any more, but it just completely masks how much struggle is behind daily living.”

As Emma moves into her late 20s, she’s realising the gap between her peers and her is widening as people start to get married and have children.

“My friends’ biggest problem might be when they have kids, but for me I might not have the energy to even survive being married or having kids at all. It just makes you feel incredibly alienated because your life is so different.”

Emma has found it really helpful when people acknowledge the gap.

“You may not be able to accommodate their difference, but just acknowledging it is enough. Particularly at things like at birthdays, or graduations, just acknowledging that it could be a painful time for that person, and just being aware that not everyone is on the same trajectory, is really good.”

Christian CFS sufferers can find it hard to manage expectations around events. Danielle says people find it hard to understand when she’s at church, she’s using all her energy. When someone understands and says, “Thanks for catching up just now,” she feels relieved they’re not expecting more from her.

For Emma, Bible study is a lot worse than church because it’s so relationally draining. But she says, “Trying to explain that is hard, because they might see you at church.” Those who do understand are gold.

“I’ve been greatly encouraged by my prayer triplet. We don’t meet very often, but about a year ago they asked me if I still prayed that God would heal me. And I said I don’t any more. They said, ‘We still do.’ That was so encouraging, knowing that they still prayed and hoped for me.”

Sufferers of chronic illness can often feel they’re not being “useful” enough at church, something Emma says is an indictment on the body of Christ, particularly in the West.

“Western culture tends to judge people on their utility and what they do, and I think theologically the church can be in danger of this as well.

“So it’s important to have regular reminders that, if you turn up to church and do nothing, that is great. Just saying, ‘We’re glad you know Jesus’. The primary task of the Christian is to worship and anything after that is a bonus.”

“They key to it is simple, yet significant – love – to see people as God sees them, made in the very image of God.” – Leigh Hatcher

The answer for the Church when it comes to chronic illness, says Leigh Hatcher, is love.

“They key to it is simple, yet significant – love – to see people as God sees them, made in the very image of God.”

People want good news, and quick fixes; they want to hear stories of progress, he says, not decline or stagnation, but that’s not love. It’s something Leigh has experienced again recently, as he’s been diagnosed with prostate cancer.

“I remember when I had CFS, to my shame, I’d think, ‘If only I had cancer, people might respond better.’

“But even with ‘the big C’ we found a similar range of responses. I think in the rush and crush of our world people struggle to know how to respond if there’s no quick easy ‘solution’.”

“The great Philip Yancey, in his book Where is God when it hurts?, writes: ‘The answer to the question, How do I help those who hurt? is exactly the same as the answer to the question, How do I love? If you asked me for a Bible passage to teach you how to help suffering people, I would point to 1 Corinthians 13, and its eloquent depiction of love. This is what a suffering person needs.’ ”

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