Exhibition unveils the hidden world of living with breathlessness

Mesmerising artwork and a haunting soundscape sheds light on the often-overlooked struggles and resilience of individuals living with breathlessness.

Artwork from the Bringing Breathlessness into View exhibition: 'Head in the Clouds'

“The worst thing I think is the stairs, going up and down the stairs. Ordinary household chores I find difficult. Very restrictive, because of your breathing. And now of late… even simple things like having a shower and getting dressed.”

Step into a world where every breath is a delicate dance between survival and confinement. The Bringing Breathlessness into View exhibition goes beyond words to immerse visitors in the vivid realities faced by those living with breathlessness.

Through mesmerising artwork and a haunting soundscape, this captivating showcase sheds light on the often-overlooked struggles and resilience of individuals living with breathlessness.

With a focus on personal experiences and a message of hope, this exhibition aims to foster understanding of what it is like to live with breathlessness and encourage people to get support.

Led by Dr Ann Hutchinson, a Research Fellow in the Wolfson Palliative Care Research Centre at Hull York Medical School, the Bringing Breathlessness into View exhibition provided a unique glimpse into a world often overlooked.

Dr Ann Hutchinson has led the Bringing Breathlessness into View exhibition
Dr Ann Hutchinson has led the Bringing Breathlessness into View exhibition

Carefully curated in close collaboration with people living with breathlessness, their families, and carers, each piece of artwork and sound captures the essence of living with the condition. From unveiling the invisible battles raging within their bodies, to highlighting hope, each piece gives insight into an experience often dismissed or misunderstood.

In Bringing Breathlessness into View, the exhibition aims to create a space where stories could be shared, and experiences can be understood. It seeks to humanise the daily struggles of people living with breathlessness, but also raise awareness that there are things that can be done to help.

Professor Miriam Johnson, Professor of Palliative Care in the Wolfson Palliative Care Research Centre, said of the exhibition, “The work that Dr Hutchinson is doing is helping to raise awareness of breathlessness, not just with the patients, but also with the clinicians – that there is something that can be done to help. So that clinicians are encouraged to look for breathlessness, and the patient is encouraged to have the agency to say this is a legitimate issue to take to my doctor.”

Funded by the University of Hull’s Impact Acceleration Fund, the exhibition is designed to be mobile, and Dr Hutchinson has taken it to clinical, community and public venues in Hull and the East Riding of Yorkshire, to spread the message to a wide range of audiences.

Artwork from the Bringing Breathlessness into View exhibition: 'Stairs Scare Me'

Voices transformed into art: The collaborative creation of the exhibition

The collaboration between Dr Hutchinson, local artists, and people living with breathlessness and their carers, was instrumental in creating the exhibition.

Participants took part in workshops where they shared their experiences and created collages to represent their feelings and coping strategies. The artists then transformed these collages into visual artwork and sound recordings, which were displayed in the exhibition.

Anna Bean, a Hull-based visual artist, engaged with each individual, carefully listening to their thoughts and intentions behind their collages.

Through a collaborative process, she sought to understand their desired message and created artworks reflecting their visions. Returning to the participants, Anna shared her interpretations and invited their feedback for further refinement. This iterative approach ensured that the final artwork represented each person's unique perspective while incorporating their input.

Dr Rob MacKay, who was Reader in Music at the University of Hull during the project (and now Senior Lecturer in Composition at Newcastle University) facilitated discussions with the participants, exploring their personal experiences of living with breathlessness and the strategies they used to cope with it.

He skilfully blended their diverse insights, creating a cohesive narrative that captured the multifaceted nature of their shared experiences. The resulting narrative provided a moving experience of what it truly means to live with breathlessness.

The resulting exhibition evokes empathy, understanding, and discussion. The diverse experiences and challenges depicted in the artwork highlight the individuality of living with breathlessness.

Listen to the soundscape 'How I cope with breathlessness':

The making of the Bringing Breathless into View exhibition

The lady hidden in the roses

Can you see her face?

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What have people visiting the exhibition said about this image?

“I really liked the art piece of the lady who was hidden behind the roses. I feel like the lady must feel very trapped – it’s as if the roses are closing in on her. People who have breathing difficulties often feel like they are suffocating and that they can’t seem to get any air; this is depicted by the roses obscuring her view.”

“It’s a wake-up call as to how patients feel when they are breathless.”

“There’s a sense of impending doom…”

“It gives a different perspective and conveys a sense of the overwhelmingness and the slow creeping of breathlessness.”

“I think this piece of art is trying to show is isolation and loneliness. The person in the image is hidden by a dense amount of foliage making her hard to see.”

“I think this art piece is trying to express that the person is no longer able to take part and get involved and so they are slowly forgotten and cut off.”

Changing perspectives on breathlessness

The exhibition has been very well received, by people with breathlessness and their families and carers, as well healthcare professionals – helping to dispel myths around breathlessness and raise awareness of what help is available.

Dr Hutchinson finds that the exhibition resonates with a lot of different people, for different reasons.

"Clinicians told us that in the future they will ask their patients how breathlessness is affecting them and offer guidance"
Dr Ann Hutchinson

She explained, “Many patients have said to me they completely identify with the art. Carers also told us it has helped them to understand the psychological difficulties that their family member may face. And healthcare professionals said it was a wakeup call as to how their patients were feeling. It gave a different perspective.”

She continued, “We even had feedback from clinicians that they imagine the images in their consultations – they have them in their mind when they are talking to a patient.”

"The art makes something that is unseen to somebody else visible in terms of experience"
Professor Miriam Johnson

Professor Johnson said, “The use of art lends itself to subjective sensation. Only the individual can know what they are going through. But if an artist takes that and depicts it, people suddenly go oh – ok, now I get it.”

She continued, “One of the most moving things I have found about the exhibition was the recording of an interview of someone with breathlessness, and you could hear the ‘click, click’ of his oxygen machine – it is like the soundtrack to his life now. He was dependent on long term oxygen.”

'Live a full life'

"How it feels to be very breathless" Credit: Anna Bean

Artwork by Bluebeany which depicts how it feels to be very breathless

Extending the exhibition’s impact

Dr Hutchinson is enthusiastic about engaging with diverse audiences, including the public, as well as researchers and clinicians. Dr Hutchinson has spread the message far and wide, from presenting at conferences and workshops; exhibiting at Festivals and events; blog posts for various organisations, including Asthma and Lung UK, the British Heart Foundation; and publications including the British Journal of General Practice and The Conversation.

In addition to research, Dr Hutchinson has already conducted teaching sessions for undergraduate medical and physiotherapy students and workshops for clinicians. Dr Hutchinson is open to continuing such efforts in the future, encouraging others to embark on their own projects inspired by the exhibition's approach to art and health.

Since the exhibition was made, AstraZeneca have approached Dr Hutchinson to undertake qualitative research on the experiences of individuals during exacerbations of COPD (Chronic Obstructive Pulmonary Disease). Participants were asked to create drawings illustrating what it feels like to have a COPD exacerbation. Anna Bean again created artwork to interpret and represent these quotes.

"We've had several clinicians say to us that they almost find the artwork quite frightening and unsettling - it can feel that way to be breathless"
Dr Ann Hutchinson

Dr Hutchinson said, “AstraZeneca are working with us to get these images out to a wider audience, including many clinicians that they work with throughout the world.”

The success of the exhibition has paved the way for expansion of Dr Hutchinson’s work, to continue to raise awareness and understanding about breathlessness.

Dr Hutchinson has hopes for the future use of the artwork from the exhibition, including a potential public health campaign and she also envisions the images being used by healthcare professionals in their consultations.

She explained, “A physiotherapist fed back that she could imagine showing the various images to people when she meets them and discusses how to live with breathlessness and asking them to pick one that particularly resonates with them and then discuss their own personal experience.”

With a strong foundation laid by the exhibition, Dr Hutchinson's dedication to raising awareness and understanding about breathlessness holds the promise of a brighter future for those affected by this symptom.

Visit the Bringing Breathless into View exhibition webpage for more details about the exhibition or visit the Breathlessness blog for details about living with breathlessness and accessing support. If you are interested in research collaboration, hosting the exhibition, or any other queries about this work, please contact Dr Ann Hutchinson. Dr Hutchinson is a member of the Wolfson Palliative Care Research Centre.