‘I only had basic knowledge of autoimmune diseases before I volunteered… Now I understand how lonely and distressing it can be’

Volunteering at the Wren Project highlights “what a complex, distressing and often lonely experience” autoimmune disease can be, says volunteer Huda.

Speaking about her experience as a volunteer, Huda shared that supporting people living with the complexities of diagnoses such as arthritis, lupus and Hashimoto’s - to name but a few - is “not an easy task” but the experience is “hugely rewarding.”

“I only had a basic understanding of autoimmune diseases before becoming a volunteer,” Huda explained. “Through my time with the Wren Project, I have come to appreciate what a complex, distressing and often lonely experience autoimmune diseases can be.”

She continued: “The confusion, fear and uncertainty… along with the sheer exhaustion and fatigue… and this stems not only from the condition itself, but also from having to navigate medical care. The appointments, treatments, the constant unknowns - all while battling symptoms and side effects.”

Huda trained as an active listener with the Wren Project two years ago and has since gone on to support individuals, our “Wrens,” with empathetic listening. With this type of support, the hope is that we can reduce the loneliness, grief and isolation felt by many living with chronic illnesses.

Describing her volunteer experience as “incredibly moving, humbling and healing,” Huda said she has discovered how “powerful” listening can be.

“I have learnt that in order to truly connect with someone and hear them, I must practice being fully present with them,” she explained.

“This work has [shown] me how disconnected we are from ourselves, and how powerful it can be to sit with someone for some time and really be there for them.”

Volunteers at the Wren Project don’t need any experience of autoimmune diseases, but instead be warm, empathetic and have a desire to support others. Huda, who found the Wren Project while looking for somewhere to volunteer for a meaningful cause, said she was drawn to “the heart-centred nature” of what the Wren Project offers.

“I have found this experience hugely rewarding,” she told us. “It's not an easy task to sit with suffering. We tend to want to move away from it; our minds want to find solutions, and our hearts want to comfort others. 

“Our instinct is to take people's suffering away, so we work hard to find ways to do that.”

But as Huda has come to understand, both in her work as a volunteer and in other areas of her life, listening can be “life-changing.”

“Sometimes, you can't take away people’s suffering. Sometimes, you just have to sit with people and make space for them to let you know what it's like to be them;  to overcome all those temptations to distract them from their pain and to search for positivity when things feel hopeless. 

“It's a life-changing practice that teaches you how to open your heart and sit still with suffering. It will change how you connect with everyone around you—and, most importantly, with yourself.”

Huda shared her experience volunteering at the Wren Project as part of our Wren Voices campaign, an initiative to amplify the voices of people living with and supporting those with rare and invisible diseases. If you would like to share your story, get in touch here.