Seen and Unseen: Exploring Life with M.E. and Long Covid Through Creativity

Members of the Long Covid Kids community continue to find powerful ways to raise awareness of Long Covid and overlapping illness through creativity and storytelling.

In this guest blog, the mother of Michael — winner of our recent Long Covid Kids poster competition — reflects on taking part in the Now You See Me: Now You Don’t exhibition organised by the Herts M.E. Group at St Albans Cathedral.

We were delighted to see Michael’s winning poster continuing to raise thought-provoking awareness as part of the exhibition alongside wider creative contributions from people living with M.E. and Long Covid. His piece explores the emotional impact of the exhibition, the importance of community, and the role creativity can play in living with chronic illness.

Michael's Mum, Penny shares her experience of a photography exhibition she and her son Michael took part in.

The Herts M.E. group is 10 years old this year and has over 500 members, including

those with M.E., Long Covid and Fibromyalgia.

When the group announced an exhibition for M.E. Awareness Day this year, I knew I

would want to be part of it. I have had M.E. for 30 years and although I am not a very

active member of the group, I have thoroughly enjoyed everything ‘art’ related that

the group does, as well as the annual canal boat trip with fish and chip lunch!

A few years ago, the group got funding for a project in conjunction with St Albans Museum and various art and craft experts came and did sessions with us which were

wonderful. That year we had a big exhibition at the museum and the following year a

smaller one. This year the group got more funding and had some lovely sessions at

the museum. I especially enjoyed the photography sessions. When I heard that this

year’s exhibition would be at St Albans Cathedral and that it would be on display for

weeks rather than days, I was thrilled. I also hoped my son Michael, who is 18 and

also has M.E./Long Covid, would want to exhibit something.

Members were challenged to share three photographs: the first representing life

before illness, or ourselves as people see us when we are having ‘a good day’. The

second image was to represent the impact of the illness, the part people don’t see.

The third was to be something that ‘brings us pleasure despite the illness’ which

could be artwork we’ve done or something else. I don’t know whose idea this was

but I think it is such a powerful way to show the impact of this illness. Michael and I

both shared three images and deciding what to share was an emotional process.

Michael also shared his award- winning LCK poster which was displayed. As well as

this there were 3D scenes, original art work and shoes with labels to represent

people too ill to take part/come. Interactive elements included pages encouraging

people to think about what they would choose to do from a list, if they had very

limited energy and could only do one or two of the things.

Around fifty people attended the opening night, including local dignitaries (Mayor of

St Albans, Deputy Mayor of Hertford, Deputy Lieutenant of Hertfordshire and a

number of local councillors). One of them had been unaware of the group before this

event, and it feels so important that they are now aware of it! I wore my LCK T shirt

and read my poem ‘The Army’ which I have shared previously on the LCK Facebook

page and is about the battle we have as parents to get diagnosis, support, medical

treatment and education for our children. Several people came up to me afterwards

who are parents of young people with M.E./ Long Covid and said they could relate to

it.

There was an incredibly warm, buzzy atmosphere and I spoke to many people,

despite having such poor facial recognition that I had no idea who I’d spoken to

before! I am terrible at names as well. It was lovely to be there with Ramona, who I’d

known from a different M.E. Group twenty-five years ago and was reunited with on

one of the boat trips!

The exhibition is a powerful reminder of the devastating impact of this illness on

people’s lives but also a powerful reminder of the amazing creativity that people

have, even when ill, and sometimes more so. Creativity is a way to cope, a way to

express difficult feelings as well as to find and express joy and a way to

communicate so much. Creating together as we have at the M.E. group Museum art

session is a way of connecting too.

Maxine Ellis who set up the group and still runs it, is an incredible person, who

seems to use every ounce of her limited energy in support of others.

The exhibition ‘Now you See Me: Now you Don’t’ was on at St

Albans Cathedral until 24th May 2026.

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