Hidden disabilities

by Holly Newton

21 years ago, at the age of 17, I began to experience overwhelming exhaustion after undertaking any activity. Many other symptoms followed - including severe chronic pain, nausea, migraines, food sensitivities, intolerance to medications, digestive issues, muscle weakness, dizziness and neurological symptoms. However, it was only 8 years after these symptoms began that I was referred to a specialist clinic and diagnosed with Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). During those 8 years, I had visited the GP countless times, undergone countless blood tests and had been repeatedly told that ‘everyone gets tired’. The battle for a diagnosis of my ME/CFS was my first experience of the challenge for my hidden disability to be taken seriously and for the necessary support to be provided.

Hidden

What we perceive of any person is simply the tip of the iceberg. When I come to lead a service on a Sunday, arrive at an event, or answer an email, I might seem ‘well’. But undertaking each of those activities is a painstaking operation and a conscious choice to prioritise those tasks. The hidden reality is carefully planned pacing, the sacrifice of other important activities, knock on impacts to social and family life and flare ups of distressing symptoms after any over-exertion.  An activity which might seem simple and straight forward to a non-disabled person is not simple and straight forward to someone living with a long-term chronic health condition, neurodivergence, mental ill-health or any kind of disability. And the task of planning and pacing so carefully, the need to mask the aspects of our reality that make others uncomfortable, and the lack of the necessary support and access accommodations – all add to the exhaustion.

Sadly, the church environment is not always a place in which disabled people feel safe to share intimate information. Do others in the church want to know that today I woke up with a debilitating migraine and felt so sick that I thought I was going to pass out? Do they want to know that it took me an hour to get myself dressed because I felt so dizzy I couldn’t stand? Do they want to know that yesterday my digestive issues flared up and I spent the day lying in bed in horrible pain? Or would they rather keep the conversation to surface level small talk? And when I do share those things – will they believe me? And how will it impact how they might perceive me as a priest and receive the ministry and pastoral care that I offer?

It is very hard to fully comprehend what cannot be outwardly perceived and what we have not ourselves experienced. And those of us with hidden disabilities can become extremely adept at masking our struggles. This is a barrier that we all need to work together to address. Disabled people need to feel safe to disclose our issues without fear that we will not be believed, without fear of being pitied and without fear of our gifts, skills and ministries being overlooked.

Vulnerable

Sharing the challenges of our personal reality, sharing the real and sometimes uncomfortable truth, requires courage and vulnerability. In a society driven by consumerism and productivity we are not good at owning vulnerability. Productivity and independence are held up as the things most to be desired. And sadly, this culture seeps into our churches. This is a huge barrier for us in being able to truly come together as the body of Christ.

As Christians, vulnerability is something we must embrace. We are human, we are limited, we are finite – but we are offered eternity by our infinite God. We are created in the image of God and our God is the God of love, the God of relationship. You cannot have relationship without being open to others, and this requires us to be vulnerable. 

We are created for community. We need one another, we are dependent upon God and inter-dependent with one another. Jesus Christ came into our humanity to live and die with and for us, taking vulnerability and suffering into God’s very self and rising with the scars of human experience etched into His hands and feet in order to draw us back into true relationship with the Trinitarian God of love, and to open to us the way to new life - a life in which relationship and vulnerability are the only way. The Kingdom of God is not about independence and productivity. The Kingdom of God is about the giftedness of vulnerable relationship with God and with others. We need to reclaim this giftedness.

This requires spaces of true fellowship and deep trust. This is about really getting to know one another, it’s about building spaces where all feel safe to share, to be honest, to name our challenges and limitations, and also to name the unique gifts and experience and perspectives that we bring. This is about love. Our church communities must be places where relationships are at the centre of all that we do.

Called

My own sense of a calling to ordained ministry goes back as long as I can remember, well before my ME/CFS symptoms began. The persistent prompting of God to explore this sense of calling has been a constant nudge throughout my life. There have been many times when I felt that my ME/CFS was an insurmountable barrier, too big to overcome. But God is, of course, bigger - as I am often gently reminded. I have been very fortunate to receive a huge amount of support and encouragement to use my unique perspective and experiences throughout my journey. For this I am so thankful, as I know that this is not the experience of everyone.

During my curacy my health has significantly worsened, forcing a period of long-term sick leave and a return to curacy on a part-time, house-for-duty basis. My disability is now far less hidden as my use of crutches, a wheelchair and mobility aids has increased. This has been a deeply challenging time as I have navigated my embodied experience as a disabled priest and faced the practical, financial and spiritual realities involved. I have been blessed by the support of my curacy parishes, the Diocese and my family.

Much of my time is now focused on studying disability theology and thinking about what it means to be truly inclusive in our churches and in our life as the body of Christ. In and through my experiences, God has been igniting within me a passion and a vision for a future where the Church can grow to more fully live out its calling to be a community of love in which the love of God is proclaimed to the world. I feel privileged to be able to add my own small contribution to this vital endeavour, along with many others who long for growth and change. I do not know what the future holds, but God does.

Broken

The Bible passage I am often drawn back to is 2 Corinthians 4:7-10 – our treasure is in clay jars, we carry around in our bodies the death of Jesus, so that the life of Jesus may also be made known in our bodies. One of the great privileges of priestly ministry is presiding at the Eucharist where we are invited to come together in communion to share in the broken body of Christ. As I break the wafer at the Communion table and invite the church community to remember and to feed upon Christ’s body, broken for us all – the invitation to share in vulnerable relationship is continually brought home to me. Christ is God made known, God vulnerable, God disabled, God broken for us. As we share in Christ’s brokenness, so we share in Christ’s life.

We need not shy away from the fullness of life which includes beauty and brokenness, limitation and eternity, strength and vulnerability, suffering and blessing. Disability, like anything, is not simply tragic. It involves suffering, of course. But it can also bring unique insights and unexpected gifts and blessings – this is the holy mystery of the mixed blessing of our human life.

Embraced

As followers of Christ we can know that nothing is hidden from God - our true life is hidden in God and ‘when Christ who is our life is revealed, then we also will be revealed with Him in glory’ (Colossians 3:1-4). My prayer is for our churches to be places where the fullness of human life and experience is embraced and celebrated, where no one feels excluded, where no one feels hidden, and where the inclusive love of God is made known. It’s a big prayer – but God is big enough to bring it about.