Story behind the Wren Project
Kate, founder and CEO of the Wren Project, and Alice, co-founder and Director, met as volunteers in the refugee crisis in Greece. Medically they could not be more different. Kate’s lupus is invisible, chronic, and affects many systems of the body. Alice’s Alopecia is aesthetic and very visible. Little would seem to connect their experiences, just as little might connect someone with Vasculitis to Type 1 Diabetes, Psoriasis to MS. Yet in each of these autoimmune diseases, an individual is forced to live within a body that is attacking itself.
Despite the differences between Alice and Kate, they felt the same powerlessness, isolation, and lack of control as their autoimmune diseases reshaped their lives. They shared experiences of anxiety, loneliness, disordered relationships to their bodies, and a deep shame of their autoimmune disease. Both Alice and Kate were challenged by their diagnoses. While Kate struggled to say the words “I have Lupus,” Alice was scared to be labelled with Alopecia, as a bald woman.
Autoimmune disease in the UK
Kate and Alice are not alone in suffering from autoimmune disease.
In the UK, almost 7% (4 million people) are known to live with at least one autoimmune condition. There are over 80 identified autoimmune diseases. The causes of autoimmune conditions are poorly understood and there is no cure. For people diagnosed, a lifetime of daily management, side-effects of medication, potential health complications, and pain lie ahead.
Beyond the medical: the social impact of autoimmune disease
As well as physical pain, the psychological and emotional impact of a diagnosis can be acute, life-changing, and debilitating. 80% of people with autoimmune disease and their families attest to the serious impact their condition has on everyday life. 66% of people living with autoimmune diseases have mental health problems. As well as depression and anxiety, the feeling of isolation and absence of community is startling.
Context of existing services
It takes on average of 5 years to receive a diagnosis of autoimmune, during which time patients have seen an average of 6 doctors. Receiving a diagnosis helps to explain symptoms, but a patient then has to adjust to the reality of life with an incurable illness.
The NHS treats the medical but does not have capacity to respond to the emotional and mental consequences. Disease specific organisations and charities provide support in the form of information and research, support groups, and telephone helplines. These are invaluable, but few have resources to offer free, ongoing, 1-1, person-centred support
The Wren Project was born
The Wren Project is a registered charity providing free, ongoing, 1-1 listening support following the early years of diagnosis – the years which are most difficult. Highly trained volunteers meet each fortnight with Wrens (participants) over video or telephone chat. Volunteers are selected and trained in active listening, and supported by experienced medical professionals.
We listen, without offering judgement or giving advice. We listen, providing space for individuals to feel heard as they navigate a new diagnosis. We believe there is power in listening.
Supporting Long Covid
In opening our doors to sufferers of Long Covid, we are struck by the remarkable similarity in experiences with autoimmune disease. We see a shared hopelessness at the confusion of medical practitioners, a fear at the lack of scientific understanding of cause, a depression at the uncertainty of duration, and the isolation and grief as a ‘normal life’ becomes increasingly unlikely. It is a lonely, anxious, and difficult journey and the Wren Project wants to help people navigate it.
Our model does not reinvent the wheel but builds on personal and professional experience to bring positive change and a supportive community to people whose health conditions leave them at the margins of mainstream life.
Find out more about The Wren Project on their website.