Setting up a ‘Grieving the Life Unlived’ meeting
Christine Sweeney created a ‘Grieving the Life Unlived’ meetup for (and with) members of Cambridge ME Group (UK). She shares her inspiration and how she set up the first session for members.
This piece is published on World M.E. Day in 2026 as it so clearly shows the emotional impact of living with an unacknowledged illness. It also shows the urge people with M.E. have to help each other and to be there for each other.
When I got ill, 25 years ago, I was working as an IT software trainer at Anglia Ruskin University. I was and still am single – having been too unwell to even consider a relationship. Before getting ill I was fit – and enjoyed swimming, cycling and walking. I regularly cycled 30 miles just for fun.
In November 2001 I had a very bad flu virus and never recovered. People said ‘Oh, you have post viral fatigue, it will pass’. But it never did. I felt exhausted all the time and then a two mile cycle ride became impossible. By the time I got home after a day at work I’d feel like I had got flu. I’d collapse onto the sofa and fall into a deep, coma-like sleep, feeling as cold as a stone.
Over the next 2 years I struggled on, but in 2003 I was becoming too ill to function. After several months off work I was tagged with the labels of ‘depression’ and ‘anxiety’. Nobody even suggested ME/CFS. I carried on working, but was forced to reduce my hours. I always felt ill and used all my holidays instead of taking sick leave. By Christmas 2005, I felt like driving into a brick wall: I just wanted everything to stop. Doctors couldn’t find anything wrong, despite how ill I had become. It was a nightmare.
Eventually I took extended sick leave, as I was too ill to work. My employers were patient but eventually had to ‘get rid of me’. I was denied ill health retirement, on the grounds that ‘Cfs/me’ was not a permanent condition! I was given a reluctant diagnosis by Addenbrookes Hospital (in Cambridge, UK), but also labelled with depression. And here I am 25 years later.
Consistent deterioration over the years means I have been mainly house bound for 12 years. I am in bed at least 16 hours a day and on the sofa the rest of the time. Due to tachycardia I feel even worse if I am upright. Throughout the whole time doctors have labelled me as deconditioned and have recommended graded exercise therapy and CBT. I feel subhuman and so isolated from the rest of the human race. After 20 years trying to make a niche for myself in the well world I felt I had failed to make any progress. I became more and more isolated.
What led you to the idea of this event/series of events?
21 years into the illness, I found myself alone, isolated and with no one around who understood. I decided that I was going to make Cambridge ME Support Group the focus of my social life. To make it happen I had to move from Oakham (East Midlands) to Cambridgeshire, settling on a house in Fordham. It’s half an hour from me to the centre of Cambridge. I attend as many face to face meetings as I can, but it’s getting harder. However, I am happy with the decision. For the first time in 20 years I feel like I am amongst my tribe. We understand each other and don’t have to keep on apologising for cancellations or for telling the truth about how ill we feel.
At last I had support and could give support, albeit in limited ways. I still had a lot of feelings and sadness which was unresolved. I tried counselling but it didn’t really help mitigate the strong feelings of ongoing loss and grief. Then I saw an article by Lav Kelly, a pediatric chaplain at a hospital in Washington D.C., USA. The article was called ‘Grieving the Life Unlived – honoring the distance between what was, what might have been’. It spoke to me deeply and I decided to see if others shared my feelings.
I posted the following message on our group FB page:
“I found this article uplifting. Perhaps we should book a Quaker meeting room and mourn as a group. Anyone up for a mutual mourning meet up, to grieve the loss of life that we have all experienced and to celebrate our survival? We could do it in the Quaker style….stand up and say a few sentences about our losses and share the hurt and pain. Or no need to say anything at all. Just feel the companionship, and healing empathy.”
People responded and and expressed a feeling that it would be good to share with people who understand. They also wanted to be able to express their feelings out loud amongst other people who understand. So there it was. I started planning the session.
I realised that all these years I have been carrying a huge weight around. The burden of extreme chronic illness, trivialised by society, medicine, friends and family. There seemed to be no outlet or haven for my feelings. What am I supposed to do with my anger, pain, loss and grief? I have carried this burden around with me for so long and I feel as if I can’t do it alone anymore. I need help, support and understanding. Hence the “Grieving the Life Unlived” meetup was born.
How did you plan the format?
It was a tricky idea to navigate… dealing with such tremendous loss. I needed to tread carefully. The Quaker style of gathering and speaking and quiet reflection seemed to fit. When my dear brother died recently some of his wake was held in this format. It resonated with me. Other than that, I didn’t really have a strong format for the meeting. I wanted the first meeting to be organic and free flowing and see to see how it came together naturally. This was possible and worked well as there were only 6 of us.
How did you choose a venue?
The venue was a Quaker house meeting room in Cambridge. When I put out feelers for the event I received suggestions of sitting in a circle and candlelight. Both were excellent suggestions and we sat in a circle and I brought a battery powered candle which I set down in the centre of the circle. It worked perfectly. The conversation flowed naturally. There were six of us. It was the first time ever that I felt that I could truly unburden myself and receive recognition, empathy and care and understanding for everything that I have suffered.
The venue was practically perfect….a choice of room sizes, accessible, plenty of parking (and tea and coffee making facilities). The warden was also wonderfully welcoming and understanding.
How did you advertise it?
I advertised the event on our private Facebook page, and via individual email by our group leader… As a group we are always careful not to leave people out who choose to avoid via social media.
How did the event itself go?
The event itself… Everyone listened attentively, with empathy and useful suggestions. We felt able to open up and freely express the terrible suffering and experiences which add up to ME being an illness with one of the lowest qualities of life. None of us had been able to do this before. That felt like a success in itself.
I opened the meeting with a welcome greeting and described the way that I have been feeling about carrying that huge weight around and never getting any acknowledgement. Everyone joined in expressing their own feelings and empathising, sharing, understanding. I deliberately wanted the meeting to be free form and it worked well as we were a small group. Future meetings may be slightly more structured as we evolve.
I left the meeting on an adrenaline and dopamine rush.
How did people feel about the event and what feedback did you get?
Afterwards, I emailed the attendees individually and asked them to provide a few sentences about the meeting which I could use anonymously for this blog post. The replies were very powerful…
Feedback from person 1:
“It was really cathartic to express these emotions. It felt like I was dumping them into the centre of the circle, getting rid of them to some extent. Also to be able to get in touch with feelings of grief that we are otherwise seldom invited to think about or express. Would definitely like to do more. This illness impacts us all a lot psychologically, maybe we try to bury it as it is so unacknowledged, and speaking about this is an important step forward…”
Feedback from person 2:
“There is something about being able to share how you feel, what you are going through and what you have lost, with a group of people who get it – who really get it – that is both incredibly cathartic and freeing. In a world in which we feel so trapped by our illness and limitations, this safe space is a chance literally to grieve, to cry, and to voice the parts of our lives that we have lost, and how hard it is to navigate the parts that remain, with like-minded, empathetic people...
“...We are all of course immensely grateful for any support that we can get from friends and loved ones, but until someone has lived with this condition, they will never truly know how it feels and the toll it takes, and so we can often feel even more alone. Therefore, the kindness and understanding from fellow people with ME in the meeting room when life has not been kind to us feels very special.”
During the meeting a very talented member sang a song that she had written. It was very powerful and touching. I would like future meetings to include a space for sharing talents or interests. We are more than our illness, but this illness takes so much.
