A few years ago our family purchased a battery-powered vacuum cleaner that recharges at a docking station plugged into the mains. The idea was that this smaller and lighter vacuum cleaner was easier for our children to manoeuvre and so assist with housework.
Several years later the built-in battery has lost a significant amount of its capacity. The result is that it now runs for roughly five minutes, barely enough time to vacuum a single room, before needing to be returned to the charging station.
My wife and I joke that this is a picture of what it is like living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
ME/CFS is a medical condition which has a significant impact on the lives of its sufferers but which is notoriously difficult to identify and treat. The most significant diagnostic symptom is defined as “marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal, such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.”
A person suffering with ME/CFS can function for a limited time period, but then requires an extended period of “recharging”.
Its debilitating nature can often remain hidden to all except close family members. Someone with ME/CFS may present well, able to perform complex tasks for a short time, but will need a significant recovery period after exertion – often only seen by those who live in close proximity.
My own interest in ME/CFS and its impact on Christian ministry and spirituality stems from my wife Jacque’s diagnosis with ME/CFS in May 2022. I’m a vicar on the West Coast, and Jacque and I have often shared in ministry tasks together. Since the onset of ME/CFS, her capacity for ministry output has been significantly reduced, and I have had to adjust my priorities to spend more time caring for Jacque and our three children.
Jacque still manages to lead our music team at church most Sundays, and parishioners often remark that she seems to be doing well. However, what others don’t see is that her output on Sunday morning means that she needs to rest for the remainder of Sunday – often Monday too.
Jacque greatly values being involved in musical worship, and loves to serve the church community in this way, meaning that the knock-on effects are tolerable.
The Disability, Spirituality and Faith Network, Aotearoa New Zealand report “Creating Welcoming Churches – a disability resource for faith communities” has some helpful pointers for churches seeking to encourage the full participation of those with physical and mental disabilities.
The church is itself disabled in its mission if it does not include people with a disability. People with a disability offer the church the opportunity to understand what it is to be the body of Christ. … The presence and ministry of people with a disability remind the church that no one person can minister alone. All members are called to do their part. All will learn to give and receive as members of the body of Christ.1
To this end, I used my study leave to learn about how living with ME/CFS affects Christian spirituality and ministry.
My research involved interviewing six people (and in some cases their marriage partners) who have served in Christian ministry and been diagnosed with ME/CFS. The aim was to hear their stories, and to draw out themes and insights that will benefit others suffering from this condition.
Living with ME/CFS brought about a significant change of perspective in everyone I interviewed.
For some, it challenged the assumptions of their theological tradition. For many, it brought to the surface questions of what is important. Others were forced to evaluate their own lives and ministries and the extent to which they were operating within the unique personality and gifting that God had given them.
Interviewees talked about becoming more dependent on family for support, and feeling guilty for not meeting others’ expectations. Marriages were strained as couples tried to balance work and children with the effects of exhaustion.
People encountered misunderstanding about their illness from a variety of sources including church members, health professionals, family, and friends.
The stress of parenting was overwhelming for many, especially for those with small children who were unable to understand the changes.
“They were very young when I got sick,” said one interviewee about his children, “and couldn’t understand why I couldn’t be around them very much. Even the noise of their playing was exhausting. It meant that there’s been distance and hurts that are hard to overcome.”
For all those interviewed, ME/CFS had a momentous impact on their involvement in ministry.
For some, ministry had to end abruptly. One interviewee shared this insight:
For a long while it felt like, after spending many years preparing for ministry, I was permanently sidelined. Then, when I started to recover, I’ve always been highly alert to my limitations. I’ve often kept commitments to a minimum and not pushed as hard as I would have liked, always feeling that I could be pushed “over the edge” and be unable to contribute again.
I asked how living with ME/CFS impacted people’s personal relationships with God. Some spoke about times when their ability to do many of the practical things we associate with being a Christian were stripped away, requiring them to come back to the heart of the gospel as being about grace.
“I had to learn to be loved simply for who I was, not what I could do,” said one person.
It’s been transforming to see and learn what the gospel is to those who aren’t winners. I feel like it’s really important to not just see CFS as something to overcome or survive so we can return back to normal life but to learn from it.
ME/CFS brings to the surface questions of suffering, redemption, and providence. These questions can be intensified by the uncertainty around what causes the condition.
Many spoke about questioning why God had allowed this to happen.
“For a long time it made me rely on him more as I was in a difficult situation I could not change,” one person began. “Now, not just because of ME/CFS, I no longer really have that sense of certainty that I used to have.”
When asked what advice people would give to someone serving in ministry with ME/CFS, many talked about boundaries, delegation, self-care and finding support from others.
It was common for people to learn the hard way that pushing through their limits often meant a longer recovery time.
“Rest! It is God’s kingdom, he will build it,” was one person’s advice. “If he gives you the energy, by all means, use it. But know that it does not depend on you.”
“Remember that sometimes we are harder on ourselves than God is,” was another piece of advice. “Your illness does not define you. Your identity is in Christ alone and God is bigger than what is happening to you physically.”
Many also spoke of the importance of having others to journey with who understood the reality of the condition. The challenge, of course, is that when someone’s energy level is depleted it is much harder to reach out to connect with others.
One of the hardest things about the study was hearing the extent to which some respondents felt misunderstood and marginalised by the church.
Whilst this was by no means universal, it was felt very keenly by some. In conversation with one such person it was raised that although the church in theory is meant to care for the sick and the marginalised, often church members are so busy with their lives or focused on other ministry tasks that the church fails to be the real community it is called to be.
One interviewee said that they were as much or more devoted to following Jesus as they had ever been, but their perspective on what that meant had changed, saying, “I find church pretty hard to swallow these days.”
A 2015 article “Love in a time of Chronic Fatigue” published by Eternity News has some helpful insights about the way in which people with ME/CFS experience church.
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 … 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.2
Paul in 1 Corinthians 12 sets out a high ideal for the body of Christ:
…those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honourable we treat with special honour. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has put the body together, giving greater honour to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honoured, every part rejoices with it. (12:22-26)
This challenges the way most churches in the West operate.
Firstly, our lives are often so privatised that church-members are often unaware of the struggles others are having.
Secondly, for those in church leadership or employed ministry, like those interviewed in this study, it can be particularly hard to share their vulnerabilities with the wider body.
Thirdly, because of the ideal of success which permeates much of church culture it can be hard to share our vulnerabilities.
Perhaps this is an area where the culture of the wider church beyond the local congregation can make a difference. As one interview subject said, “Find a diocese with a culture that accepts people with disabilities and works with them to maximise their ministry within their capacity.” My experience of working within the Nelson diocese whilst navigating my wife’s diagnosis of ME/CFS has been a positive one of support and encouragement, including the opportunity to make this the focus of my study leave.
Space needs to be given to allow those affected by ME/CFS to wrestle with the hard questions. The psalms provide plenty of examples of God’s people calling out to him in lament. For many, the journey with ME/CFS has ultimately brought a deeper understanding of God and his grace.
For those involved in Christian ministry, our sense of worth can easily become confused with our perceived “success” or output. Living with ME/CFS unmasks this dangerous fallacy.
In his book, Chronic Fatigue Syndrome, Christianity and Culture, James Rotholz concludes:
It matters not if one’s gifts and assets are many or few, what matters is how faithfully one employs the gifts at one’s disposal. For God’s pleasure is not with quantity but with quality. For those of us who commit ourselves to lives of faithfulness before him, our disabilities can become assets as unlikely channels of love and service.3
Like many chronic conditions, ME/CFS has a far-reaching impact on the lives of those who suffer from it and their families.
It was a great gift for me personally to take a sabbatical to both support my immediate family and to hear the stories from those who have had similar experiences to ours. My hope is to stimulate further conversation about living with ME/CFS, especially for those in local and regional church leadership.
1Terrell, Vicki. "Creating Welcoming Churches: a disability resource for faith communities". Disability, Spirituality & Faith Network, Lower Hutt, 2015.
2Hatcher, Leigh. Eternity News Article – "Love in a time of Chronic Fatigue", 2015. From https://www.eternitynews.com.au/archive/love-time-chronic-fatigue/ accessed 2/2/23
3Rotholz, James. Chronic Fatigue Syndrome, Christianity and Culture. 2002, CRC Press.
Vallings, Rosamund. Chronic Fatigue Syndrome M.E. Symptoms, Diagnosis, Management. 2nd ed 2020. Calico Publishing Auckland.
Check out other articles in the
series below.
More articles in the
series are to come.
We have invited these writers to share their experiences, ideas and opinions in the hope that these will provoke thought, challenge you to go deeper and inspire you to put your faith into action. These articles should not be taken as the official view of the Nelson Diocese on any particular matter.
A few years ago our family purchased a battery-powered vacuum cleaner that recharges at a docking station plugged into the mains. The idea was that this smaller and lighter vacuum cleaner was easier for our children to manoeuvre and so assist with housework.
Several years later the built-in battery has lost a significant amount of its capacity. The result is that it now runs for roughly five minutes, barely enough time to vacuum a single room, before needing to be returned to the charging station.
My wife and I joke that this is a picture of what it is like living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).
ME/CFS is a medical condition which has a significant impact on the lives of its sufferers but which is notoriously difficult to identify and treat. The most significant diagnostic symptom is defined as “marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal, such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse.”
A person suffering with ME/CFS can function for a limited time period, but then requires an extended period of “recharging”.
Its debilitating nature can often remain hidden to all except close family members. Someone with ME/CFS may present well, able to perform complex tasks for a short time, but will need a significant recovery period after exertion – often only seen by those who live in close proximity.
My own interest in ME/CFS and its impact on Christian ministry and spirituality stems from my wife Jacque’s diagnosis with ME/CFS in May 2022. I’m a vicar on the West Coast, and Jacque and I have often shared in ministry tasks together. Since the onset of ME/CFS, her capacity for ministry output has been significantly reduced, and I have had to adjust my priorities to spend more time caring for Jacque and our three children.
Jacque still manages to lead our music team at church most Sundays, and parishioners often remark that she seems to be doing well. However, what others don’t see is that her output on Sunday morning means that she needs to rest for the remainder of Sunday – often Monday too.
Jacque greatly values being involved in musical worship, and loves to serve the church community in this way, meaning that the knock-on effects are tolerable.
The Disability, Spirituality and Faith Network, Aotearoa New Zealand report “Creating Welcoming Churches – a disability resource for faith communities” has some helpful pointers for churches seeking to encourage the full participation of those with physical and mental disabilities.
The church is itself disabled in its mission if it does not include people with a disability. People with a disability offer the church the opportunity to understand what it is to be the body of Christ. … The presence and ministry of people with a disability remind the church that no one person can minister alone. All members are called to do their part. All will learn to give and receive as members of the body of Christ.1
To this end, I used my study leave to learn about how living with ME/CFS affects Christian spirituality and ministry.
My research involved interviewing six people (and in some cases their marriage partners) who have served in Christian ministry and been diagnosed with ME/CFS. The aim was to hear their stories, and to draw out themes and insights that will benefit others suffering from this condition.
Living with ME/CFS brought about a significant change of perspective in everyone I interviewed.
For some, it challenged the assumptions of their theological tradition. For many, it brought to the surface questions of what is important. Others were forced to evaluate their own lives and ministries and the extent to which they were operating within the unique personality and gifting that God had given them.
Interviewees talked about becoming more dependent on family for support, and feeling guilty for not meeting others’ expectations. Marriages were strained as couples tried to balance work and children with the effects of exhaustion.
People encountered misunderstanding about their illness from a variety of sources including church members, health professionals, family, and friends.
The stress of parenting was overwhelming for many, especially for those with small children who were unable to understand the changes.
“They were very young when I got sick,” said one interviewee about his children, “and couldn’t understand why I couldn’t be around them very much. Even the noise of their playing was exhausting. It meant that there’s been distance and hurts that are hard to overcome.”
For all those interviewed, ME/CFS had a momentous impact on their involvement in ministry.
For some, ministry had to end abruptly. One interviewee shared this insight:
For a long while it felt like, after spending many years preparing for ministry, I was permanently sidelined. Then, when I started to recover, I’ve always been highly alert to my limitations. I’ve often kept commitments to a minimum and not pushed as hard as I would have liked, always feeling that I could be pushed “over the edge” and be unable to contribute again.
I asked how living with ME/CFS impacted people’s personal relationships with God. Some spoke about times when their ability to do many of the practical things we associate with being a Christian were stripped away, requiring them to come back to the heart of the gospel as being about grace.
“I had to learn to be loved simply for who I was, not what I could do,” said one person.
It’s been transforming to see and learn what the gospel is to those who aren’t winners. I feel like it’s really important to not just see CFS as something to overcome or survive so we can return back to normal life but to learn from it.
ME/CFS brings to the surface questions of suffering, redemption, and providence. These questions can be intensified by the uncertainty around what causes the condition.
Many spoke about questioning why God had allowed this to happen.
“For a long time it made me rely on him more as I was in a difficult situation I could not change,” one person began. “Now, not just because of ME/CFS, I no longer really have that sense of certainty that I used to have.”
When asked what advice people would give to someone serving in ministry with ME/CFS, many talked about boundaries, delegation, self-care and finding support from others.
It was common for people to learn the hard way that pushing through their limits often meant a longer recovery time.
“Rest! It is God’s kingdom, he will build it,” was one person’s advice. “If he gives you the energy, by all means, use it. But know that it does not depend on you.”
“Remember that sometimes we are harder on ourselves than God is,” was another piece of advice. “Your illness does not define you. Your identity is in Christ alone and God is bigger than what is happening to you physically.”
Many also spoke of the importance of having others to journey with who understood the reality of the condition. The challenge, of course, is that when someone’s energy level is depleted it is much harder to reach out to connect with others.
One of the hardest things about the study was hearing the extent to which some respondents felt misunderstood and marginalised by the church.
Whilst this was by no means universal, it was felt very keenly by some. In conversation with one such person it was raised that although the church in theory is meant to care for the sick and the marginalised, often church members are so busy with their lives or focused on other ministry tasks that the church fails to be the real community it is called to be.
One interviewee said that they were as much or more devoted to following Jesus as they had ever been, but their perspective on what that meant had changed, saying, “I find church pretty hard to swallow these days.”
A 2015 article “Love in a time of Chronic Fatigue” published by Eternity News has some helpful insights about the way in which people with ME/CFS experience church.
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 … 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.2
Paul in 1 Corinthians 12 sets out a high ideal for the body of Christ:
…those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honourable we treat with special honour. And the parts that are unpresentable are treated with special modesty, while our presentable parts need no special treatment. But God has put the body together, giving greater honour to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other. If one part suffers, every part suffers with it; if one part is honoured, every part rejoices with it. (12:22-26)
This challenges the way most churches in the West operate.
Firstly, our lives are often so privatised that church-members are often unaware of the struggles others are having.
Secondly, for those in church leadership or employed ministry, like those interviewed in this study, it can be particularly hard to share their vulnerabilities with the wider body.
Thirdly, because of the ideal of success which permeates much of church culture it can be hard to share our vulnerabilities.
Perhaps this is an area where the culture of the wider church beyond the local congregation can make a difference. As one interview subject said, “Find a diocese with a culture that accepts people with disabilities and works with them to maximise their ministry within their capacity.” My experience of working within the Nelson diocese whilst navigating my wife’s diagnosis of ME/CFS has been a positive one of support and encouragement, including the opportunity to make this the focus of my study leave.
Space needs to be given to allow those affected by ME/CFS to wrestle with the hard questions. The psalms provide plenty of examples of God’s people calling out to him in lament. For many, the journey with ME/CFS has ultimately brought a deeper understanding of God and his grace.
For those involved in Christian ministry, our sense of worth can easily become confused with our perceived “success” or output. Living with ME/CFS unmasks this dangerous fallacy.
In his book, Chronic Fatigue Syndrome, Christianity and Culture, James Rotholz concludes:
It matters not if one’s gifts and assets are many or few, what matters is how faithfully one employs the gifts at one’s disposal. For God’s pleasure is not with quantity but with quality. For those of us who commit ourselves to lives of faithfulness before him, our disabilities can become assets as unlikely channels of love and service.3
Like many chronic conditions, ME/CFS has a far-reaching impact on the lives of those who suffer from it and their families.
It was a great gift for me personally to take a sabbatical to both support my immediate family and to hear the stories from those who have had similar experiences to ours. My hope is to stimulate further conversation about living with ME/CFS, especially for those in local and regional church leadership.
Check out other articles in the
series below.
More articles in the
series are to come.
