‘I was feeling the strongest I ever have… until I wasn’t’

Seb, 32 from Bristol, initially thought they were burnt out or living with chronic fatigue, when they were finally diagnosed with Sjogren’s disease. But thanks to group support from the Wren Project, Seb found a space where they felt seen and understood as they navigated their diagnosis.

“After a wonderful summer tending to a new allotment, I was feeling the strongest I ever have felt. Until, I wasn’t. I started to notice flu-like symptoms persistently, I was more tired than usual, with body aches and stiffness. 

“It was the struggling with my concentration at work and having difficulty with my memory that led me to the GP a couple of months later in October 2023.”

Things became more difficult when Seb found their energy levels dipped, and they struggled to find the energy to shower, or make their own meals. Still, their routine bloods came back as normal.

“I was stiff all the time,” Seb told us. “I stopped being able to walk to work. When the pins and needles started, I knew I needed to steer the GP in a direction so I could get help.

“I asked for a referral to Neurology as the difficulty with my walking was scaring me a bit, but didn’t seem to concern professionals. It was taking too long to get seen, my workplace wanted an explanation as to why I was ill.”

Seb decided to go privately to try and get some answers as to why their health was deteriorating. 

In July 2024, they were diagnosed with functional neurological disorder. However their blood work was still normal, so Seb chased to get specialist bloods done. These showed Sjogren antibodies. 

“By the time Rheumatology saw me in November 2024, I was using a wheelchair. I only manage once a week to do the food shop. After more blood tests, a Schirmer’s tear test and an ultrasound, I finally got a call in February 2025 with a diagnosis of Sjogren’s.”

Seb, who received little information as to what Sjogren’s was at the time of their diagnosis, said having to explain themselves to others is an ongoing challenge.

“I feel ill every day, but when people ask how I’m doing, especially after doctors appointments, they expect doctors to have all the answers and solve all the problems. But that’s not the case,” they said.

“I have to keep explaining this is a lifelong disease and may never get better. Yet, I am somewhat at peace with that, even though others don’t seem to be.”

Seb, who received group support from the Wren Project, said the sessions were “one of the best things I could have done.”

“There was nobody trying to fix me or make me feel any sort of way,” Seb explained. “I was allowed to just be. There was no need to put on a happy face, or try to sugar coat how bad I was feeling. I didn’t need to explain myself or have someone make me feel awkward.

“It gave me a reason to wake up on Saturday mornings and put me in a better mood for the weekend, which would stretch out into the week. The compassionate curiosity of our facilitators Nick and Linda is something I’ve always craved from others but very rarely receive. I felt truly seen.”

Learning to live with their diagnosis can be “extremely lonely,’ but Seb has also uncovered new things about themselves.

”It feels like I have lost my identity as the ‘helper.’ However,I also have a great deal of mental strength to offer and hold space for others in that way.

“It can be extremely lonely when you’re the only one experiencing the symptoms which then impacting daily living, some days it feels like no one understands.

”I’ve learned that my worth - or anyone else’s - should not be tied up in how much we can get done or where we’ve been. I’ve learned to start trusting myself and my body more.”

Despite life feeling that it moves “at a slower pace” since their diagnosis, Seb said finding community in support at the Wren Project has made them feel “understood.”

“[I realised] we didn’t even need to have the same disease to be having the same experiences,” Seb told us. “My fiancé has been my rock, he will help advocate for me at medical appointments and try to make my life as easy as possible which has meant getting me multiple different mobility aids for in and out of the home.”

For anyone else receiving a diagnosis of an autoimmune disease, Seb shared: “Life will look different and it will be hard, but there are ways around things.

”I won’t tell you it gets better, because it might not. But having supportive people around you can help ease the load.”

Seb shared their story with the Wren Project as part of our Wren Voices campaign. If you would like to share your story, you can reach out to us by emailing hello@wrenproject.org.