"No, I'm not just extremely tired."

Community voices - understanding Long Covid and ME through music, art, words and film

This week we’re sharing voices from the ME and Long Covid communities.

ME and Long Covid are poorly understood and can be difficult to explain. We know many of you struggle - as we do - with explaining your illness and symptoms to friends, relatives and the wider world. We all hear about ‘extreme tiredness’ a lot, not least because it’s the first symptom listed on the NHS webpage. For many, this doesn’t come close to explaining the symptoms of this multi-system disease.

So we thought we’d turn to the arts and explore how they can help express our experiences. We asked the community:

‘Is there a song, book, poem, film or piece of art that you think would help people understand what it's like to have ME or Long Covid?’

Here is a selection of your suggestions for music, poetry, art, films and books that get to the heart of experiences of ME and Long Covid.  We hope you enjoy it! Please feel free to share with those who would like to understand better.

Music

Music has always been an important part of my and my husband’s lives, whether making it or listening to it. One of my clearest memories of falling in love with James was listening to him playing Don’t Think Twice, It’s All Right by Bob Dylan on the guitar. 

As I got sick, and James did too, I started hearing our stories reflected back in the lyrics of the music I listened to. Whether that was an old favourite from Weezer -

It's time I got back to the good life 

- or Taylor’s Swift’s latest album -

I had the shiniest wheels, now they’re rusting

- it’s always been all about music for me.

Many others with ME and Long Covid feel the same. Barbara (NW England) described how Nightcall by London Grammar resonated with her experiences.

I'm giving you a nightcall to tell you how I feel

‘The song is all about vulnerability, reaching out to my husband late into the night when I can't sleep to tell him how I feel. It epitomises sharing my innermost feelings about how ME has changed my life. The line 'there's something inside you, it's hard to explain' sums up the struggle trying to explain ME to someone else [...] It sums up the way I have so little energy but desperately want help to get my life back.’

On the other side of the pond, Matt Lazell-Fairman in Connecticut reflected on Souvenirs by John Prine:

Well, it took me years to get those souvenirs
And I don't know how they slipped away from me.

‘John’s music has been deeply cathartic for me since I first heard his most recognized song Angel from Montgomery, several years after I got sick. His songs speak to grief and loss with uncommon empathy, wit, and a remarkable ability to find joy and lightness in pain. This song, Souvenirs, reflects on the loss that accumulates with time and for a long time expressed so acutely the loss I felt, getting sick with a deeply marginalized, terribly debilitating, untreatable illness at just 22.’

There were so many musical suggestions that we made a playlist. We appreciated some very to-the-point suggestions, including Help by the Beatles. Doreen in Scotland, who nominated I Want To Break Free by Queen, said:

‘ME has taken over my whole life. The thing it's taken the most is the freedom to do what I want when I want’.

Tropics of Scorpio wrote I Can’t Wait To See The End of ME for a fundraiser concert earlier this year organised by Isaac, who is 14 years old and has a sister with Very Severe ME. 

Other notable mentions:

Stronger Than Ever by Raleigh Ritchie:

‘I think the lyrics and the video sum up what it’s like to have an invisible illness and going through the stages of denial and then panic and desperation’ - Aaron

Right Where You Left Me by Taylor Swift:

‘Being left behind whilst the world moves on’ - Hannah, UK

Treat Me Like A Woman by Lucy Rose:

‘The song gets across what it’s like to be treated poorly by medical staff’ - Anonymous

Swallowed In The Sea by Coldplay:

‘Long Covid and ME doesn’t get to swallow up the best of me anymore. My life belongs to me, not to these illnesses’ - Amy, New York

Our callout also highlighted the incredible creativity within the ME and Long Covid communities. First and foremost, the biggest shoutout to Pete Caruso, who used Suno AI to create music for lyrics he wrote for our campaign, making the #ThereForME theme song we never knew we needed.

Credit: Lyrics - Pete Caruso, Music - Suno AI

Paula Knight shared Lightness And Weight with us, a song written when she had mild ME, explaining the ‘pull between not having physical strength and having to have existential strength to stand my ground about boundaries’.

Poetry and art

Of course, there’s more to it than music. Carole pointed us to the poem The Loneliness One Dare Not Sound by Emily Dickinson, reflecting the painful loneliness of living with Severe ME. 

I fear me this—is Loneliness—
The Maker of the soul
Its Caverns and its Corridors
Illuminate—or seal—

There are quite a few poets out there sharing their work on social media to illustrate their experiences. Emily Fraser’s Heartsink gives the brutal reality of experiences of healthcare for ME:

They call us heartsink patients
because we don’t get better
but we don’t die either.

And some poignant words from a poem by Lizzie H - one of several she shared with us: 

We adapted, readjusted and made the best,
But even the pared down life
Results in needs for months of rest,
How much more do I have to hand over,
Until I become lesser, lesser, less.

Frida Kahlo’s art was another popular choice. Frida lived with chronic pain and Without Hope depicts her being force-fed as she lies in bed, resonating with the feeling of being trapped, often very literally in bed, by ME. 

Credit: Without Hope, Frida Kahlo

We also received various pieces of art created in a Northern Ireland craft group, relating experiences of ME and post-exertional malaise.

Credit: Jacinta Diamond, Hope 4 ME Fibro Northern Ireland Online Craft Group

If you’re a fan of performance art, you may be interested in I Would Be Here If I Could, a collaborative art project supported by Arts Council England. The project is co-curated with people with ME and Long Covid, placing messages from people with ME and Long Covid at places they love but which they are no longer able to visit. 

Films and books

There are few in the ME community who haven’t heard of Unrest, Jennifer Brea’s Sundance award-winning documentary, capturing her experiences with ME, her search for answers and her defiance in the face of doctors telling her it’s ‘all in her head’.

We were sent several short films, including The Body With No Face, a short film from Australia showing experiences of Severe ME. 

Mixing art with documentary, several people sent us this interview with Anil van der Zee, a Dutch former professional ballet dancer, about his experiences of Severe ME. Michiel in Scotland explained:

‘I strongly feel that any health or social care professional dealing with a person with ME or Long Covid should be made to watch this so they can get some *minimal* level of understanding of what ME can do to a person’.

And finally, a few books to put on an early Christmas list for the person in your life you’d like to understand ME better:

• The Puzzle Solver/Waiting For Superman by Tracie White, a book following US-based geneticist Ron Davis as he uncovers new possibilities for treatments and potentially a cure for ME, motivated by his son Whitney’s illness.

• A Girl Behind Dark Glasses by Jessica Taylor-Bearman, telling the story of Jessica’s experiences with ME, in a book written using voice-activated technology.

• The Pillow Writers’ Anthology 1, featuring poetry and prose from 17 writers united by their experiences of chronic illness. 

Thanks to all of you who shared your ideas and suggestions with us. We’ll see you next week.