The Wren Project: The new autoimmune charity providing free, ongoing, 1-1 listening support for people with Long Covid

• UPDATE: Wren Project received a grant from the National Lottery Community Fund to run six sets of facilitated group sessions for people with Long Covid. The funding has now ended and the charity is no longer open to new referrals. It hopes there may be scope to open this up again in the future.

In this article Alice Peck, Director of Communications and Co-Founder of The Wren Project, tells us more about the charity which launched this year – and how it aims to assist those living with Long Covid.

The Wren Project, a UK charity which supports people diagnosed with autoimmune disease, now extends its support to those with Long Covid. 

While there is still no definitive understanding of the causes of Long Covid, increasing research points to the presence of auto-antibodies to suggest a link between Long Covid and autoimmune disease. Higher incidence of Long Covid in women, as well as strikingly similar symptoms (persistent fatigue, headache, shortness of breath, anosmia, muscle weakness, intestinal disorders, and skin manifestations) also point to an autoimmune component.

In autoimmune disease, auto-antibodies attack the body’s own proteins, causing an inflamed immune response that affects different organs and systems of the body. In the UK, 6%, or 4 million people, are known to live with at least one autoimmune condition. 75% of those diagnosed are women. There are over 80 identified autoimmune diseases, with incidence rising by 3 - 9% each year. The social costs of autoimmune disease are huge; just three (type 1 diabetes, rheumatoid arthritis, multiple sclerosis) cost the UK more than £13 billion a year. Unemployment amongst sufferers is 13% (almost three times higher than the UK population as a whole). 

The Wren Project does not respond to the medical symptoms, but to the emotional and psychosocial impact of diagnosis which, research and personal experience show, is acute and life changing. Studies capture the sense of: stress, isolation, strained relationships, and negative coping strategies. 80% of people with autoimmune disease and their families attest to the serious impact autoimmune diseases have on everyday life; 66% of people with autoimmune disease have mental health problems.

Receiving a diagnosis of autoimmune disease involves a sudden departure from what is normal and familiar. Individuals are forced to accept a new identity which they did not choose. The Wren Project supports people during these early years following diagnosis - the years which are most destabilising and hard. We provide support at a time when individuals are passed from doctor to doctor, with little understanding of cause, with no medical cure, when diagnoses are changing, when advice is confusing.

We are a registered charity providing free, ongoing, 1-1 listening support. Highly trained volunteers meet each fortnight with Wrens (participants) over video or telephone chat. The volunteers are 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.

The Wren Project is unique in that we are not concerned with the specific diagnosis of disease. From first-hand experience living with vastly different autoimmune diseases, we understand that despite the difference in conditions, there is a shared sense of powerlessness, isolation, and lack of control when forced to live within a body that is attacking itself. Amongst everyone we support, collectively diagnosed with 35 different conditions, there is a sense a feeling of being left behind by peers, marginalised from ‘normal life.’ We see anxiety, disordered relationships with one’s bodies, loneliness, and deep shame of an autoimmune disease, regardless of what that disease is. 

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 experience and the Wren Project wants to help people navigate it.

• Photo by Katherine Hanlon on Unsplash