Invisible illness, disability and participation in church life

by Elizabeth Hodge

I have attended church since birth, and faith has always been central to my life. In childhood I did not suffer from any invisible illnesses or disability and participated fully in the life of the church as I grew. One day, I became acutely unwell and when this did not resolve after months, I was diagnosed with Myalgic Encephalitis (also known as ME or Chronic Fatigue Syndrome/ CFS). Overnight, I disappeared from the life I had always known, including church life. I spent much of my time in bed, suffering from debilitating fatigue and a myriad of other symptoms – digestive problems, nausea, dizziness, headaches and pain. At the time, no-one seemed to know how to respond to this situation of a young person with an unexplained, invisible illness of unknown prognosis.

Despite this, with support I later trained as an Occupational Therapist; a health professional who assists people experiencing illness or disability, to overcome the barriers to participation in life. Occupation refers to our participation in everyday activities, which allow us to hold valued roles and provide us with a sense of identity, health and wellbeing. Everyone participates in a variety of restorative, productive and pleasurable occupations throughout each day, week, month and across our lifetime, giving our lives meaning and purpose. The balance can be shifted by seasons in our lives, or health problems, or disability.

Faith is a unique source of energy that comes from our inner beliefs about life’s meaning which drives us to participate in a variety of occupations. During COVID-19 everyone was deprived of being able to engage in meaningful occupations, due to external factors. But this is the daily, lived experience of many people with disabilities, including invisible illnesses.

I have found it very difficult to belong to a church since my illness because I can’t participate in the same way that much of the congregation can. Adjustments to occupations can be made through providing equipment, or teaching strategies to do things differently, to achieve what people would like to achieve in their lives.

So how can people with invisible illnesses be involved in valued roles at church, to enhance their health and wellbeing? The following are some ideas and suggestions around how to include and enable those with invisible illnesses.

Flexibility of attendance

Some people with invisible illnesses have a time of day when they feel better, so the offer of a morning and an evening service option gives them flexibility of attendance.

Sitting, standing and kneeling times

I find I can only attend one church activity per week in-person, particularly if it involves periods of standing. Taking care to consider seated, standing and kneeling elements of a service and offering alternatives will benefit those with invisible illness, and other members of the congregation.

Smaller chunks

I can no longer offer to serve on the worship team because I cannot cope with lengthy rehearsals and services. Attendance at one meeting or service can make someone unwell for days, or weeks. Consideration could be given to the length, frequency and duration of events. Breaking these down into smaller chunks, like being able to play one of two songs, or offering online options for participation might make them more manageable for many people.

Flexible rotas

When creating rotas, perhaps two or more people could be rostered on for a task and that way, the person with invisible illness can simply hand over to someone else if they are unwell on the day, without feeling they have let others down.

Online services, groups and events

A local minister with invisible illness had been unable to lead a church service for decades. But since COVID-19, they have been able to lead morning prayers every day online because it takes less energy and can be done from home. Pre-recording elements of a service can allow a person with invisible illness to contribute as a leader, reader or intercessor, joining at their best time of day, without additional pressures. Such online options, also including live broadcasts or podcasts, can be a lifeline to those with invisible illnesses, allowing them to participate in the life of the church from home, at the time and in the manner they are able.

Quieter services and quiet spaces

I find that a service with very loud music, or dozens of noisy people instantly drains my energy. Many people with invisible illnesses and other disabilities can find sensory elements of a church service rapidly depleting. Quieter services or the offer of a quiet space to retreat to may allow some people to attend. Others may appreciate a church building being open, so that they can engage in solitude for contemplation, at a time and in a manner that they can tolerate.

Sensitive conversation

Be aware of your conversation topics with people experiencing invisible illness. Commonly we ask how people are, or what they do for a living, but these can be triggering topics for someone who constantly feels unwell or is unable to work due to their disability. I used to find people who made statements such as “You don’t look sick” were extremely upsetting.

Ask

Many people with invisible illnesses may avoid participation in church life because they fear being a burden, or hassle to others when trying to get their needs accommodated. Accessibility should not be an afterthought, so broach a thoughtful conversation and ask what works best for the person. Comparison to others is not helpful and invisible illnesses fluctuate, even within the space of one day. Find out the person’s best times of day and be flexible if things change. Usually, the person will know what might work for them, or they might appreciate support to try something out; with no judgement if it doesn’t work out on the day.

Offer pastoral check-ins

It’s important that people belong, feel welcome and valued, whatever their contribution to church family life. Active membership shouldn’t be dependent on in-person attendance. Life with invisible illness is extremely isolating; pastoral teams should check in regularly with people absent from services and assumptions should not be made about them having left the church. When I was too unwell to leave the house, the provision of a home communion service was appreciated.

With a little thought, it is possible to make church more accessible for those experiencing invisible illnesses. As we make space for all members of the body of Christ, we must find ways to make everyone feel that they belong; to gain meaning and purpose through participation in faith-related occupations, even when their contribution looks different from our expectations.