Free, ongoing,1-1, listening support for people with Autoimmune Disease and Long Covid
The Wren Project is a registered UK charity providing free, ongoing, 1-1 listening support for adults diagnosed with autoimmune disease. Responding to increasing evidence of the autoimmune component to long covid, The Wren Project now extends its support to people with Long Covid.
Story of 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 believed themselves completely 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 medical 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.
Context of Autoimmune Disease in the UK
Kate and Alice are not alone in suffering from autoimmune disease. 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).
What the Wren Project does:
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.
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 lifechanging. 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.
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. Our individualised support helps people feel less isolated and more equipped to face the emotional and social upheaval of living with an autoimmune disease.
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 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.
The Wren Project is a new and unique charity. We are not concerned with the specific diagnosis of disease but the shared experiences of life following diagnosis. 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 40 different conditions, there is a sense a feeling of being left behind by peers, marginalised from ‘normal life.’ We see anxiety, disordered relationships to bodies, loneliness, and deep shame of an autoimmune disease, regardless of what that disease is.
We are a registered charity providing ongoing 1-1 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. Our support lasts around 9-12 months.
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.
To access our free, 1-1, ongoing support refer yourself, or another at https://www.wrenproject.org/refer