The Chronic Illness Inclusion Project ran two extended online focus groups, each running over an eight-week period, where people could come together and explore issues around chronic illness and disability.

The online aspect of our research wasn’t for reasons of cost or convenience, it was fundamental to our aim of reaching an invisible housebound population. We wanted to include people who are often left out of traditional consultations and focus groups due to significant energy impairment: people who may too unwell to attend events, and whose concentration span is limited, sporadic and unpredictable due to “brainfog”. This is the very group that welfare policy makers have assumed are “just tired”, like everyone else, and who simply need to “try harder”.

We heard that their day to day reality is very far from this stereotype. The flexible setup of our research forum meant that people could take part from home, at time of their choosing, and had two weeks to respond to questions. Researcher, Stef Benstead, has collected the responses of our participants to the research process: It was often the first time that anyone had shown any interest in their experiences or valued their opinion on matters relating to chronic illness and inclusion in society. “I appreciate the opportunity to be heard and to share my experiences. No-one has ever really asked me about any of this before actually!” “I too have struggled to answer the questions only because it’s been so long since anyone wanted my opinion and the brain fog that comes with my illness making it difficult to remember the right words.”

Participants were grateful for the opportunity to take part in something that was intellectually stimulating and of relevance and interest to them: “I found it difficult to focus and switch my brain on again but it did me the world of good. You have all been amazing and it is a privilege to have spent time with you.” “The project has definitely helped me think more deeply about disability issues and the difficulty of applying frameworks to them.”

The forum created a community of people with shared experiences who could gain comfort from and fellowship with one another… “Thank you so much for creating this place where we could listen and be heard.” “Thanks to everyone who contributed; I’ve felt equally comforted and outraged by your stories.” … and which provided a space for safe expression of fears, difficulties and things that help. “I have appreciated learning from and listening to the perspectives of others without feeling judged, pitied or different.” “It was great to be able to talk in a non judgemental [sic] environment, while learning the similarity & differences joining people with life limiting illnesses”

Participants appreciated the learning that they derived from one another… “It has also many [sic] meant I have a better understanding of my own relationship with my health and conditions. I think there is a long way to go but I feel I have greater acceptance and understanding.” “I found it to be a helpful, informative and sometimes profoundly moving experience.” … which they were able to use to improve their lives. “I am incredibly grateful to this project for finally giving me the language to express who [sic] my chronic illness effects me in a way both that I can explain it to those who need to know, but particularly to decision makers. That has made a huge difference in getting somewhere with getting the help I need.” “I am slightly more confident in ascertaining my own health needs and have improved my relationship(s) with my health providers, or made efforts to, so that I can feel more in control.”

Taking part in the forum gave participants hope for the future: that things could be better and the damage of the past eight years was neither necessary nor inevitable. “As awful and abusive as I think the last 7 years have been for people like us, it’s triggered a kind of activism and urgency in people with chronic illness and the people who care about us that I hope we can come out of the other side in a better place, where we’re treated like people. So, yes, thank you for being part of giving me hope again.” “I have really appreciated this opportunity and think it has great potential… I do hope it continues in some way as it is imperative we chronic illness folk have a platform to air our opinions and experiences; and I hope to work with you all in the near future.”

It was important to participants that the work be taken forward and put into practical effect, rather than being merely more words: “It’s good in that it’s enabled people to express their views but it’s been too wordy – far too concerned with terminology… My understanding of the social model or any other theoretical construct is low because I lose the will to live trying to plough through the words which at the end seem to bear little relation to my life.

However, this project is probably the first stage in disabled people getting together online to campaign for better treatment, especially in relation to our iniquitous benefits system.”

For further information on the project visit chronic-illness-citizenship-mobilising-collective-voice-social-change/