Ambassadors

 

Ambassadors champion the work of the Wren Project, speaking from their own experiences of living with autoimmune disease and recognising the impact of the charity on people’s lives.

Jade’s story…

The Wren Project has impacted my relationship with my AI disease in that I’m not scared of it anymore 

  • At first, they thought it was Lupus. When I was moved to a new consultant, they worked out that I have a connective tissue disorder called Dermatomyositis and I have a Rheumatoid Arthritis overlap. I’ve also got interstitial lung disease which has left scarring on my lungs and a MDA5 positive antibody, that my doctor said not to google because of the horror stories.

  • I also felt relief because it had been a horrendous horrendous nine months prior where no doctors were seeing me, listening to me, or just fobbing me off.

    I felt very scared – especially finding out about my lungs. I was worried and I just didn’t know what to say or think or do. My diagnosis happened just before my 30th birthday, it was just heart-breaking.

    I felt very sorry for myself because I just thought ‘who’s going to understand this? What does this mean? What does this look like in a few years time?’ I was in a lot of pain. The feeling that no one understands how this feels, no one understands what I’ve been through. It haunts me now – still makes me really sad.

  • After a good chat about my diagnoses, he sent me an email to recommend that I sign up to the Wren Project.

  • The Wren Project gave me the opportunity to solely focus on my illness. It was a really good experience, it really works - it provided me support, it gave me somewhere to think things through, it gave me somewhere to vent, to let things out. It’s helped me to understand how I actually feel and what I need. It gave me space to think - think without judgement, think without stress, think without other people’s involvement.

  • …or how to lean into it, and just to understand what it is, and how it makes me feel, and how to go past it, and I think that’s important.

“The Wren Project gave me space to feel bad when I needed to feel bad.”

Matt’s story…

The Wren Project has been a big part of an important journey of self-acceptance for me. It has shown me that I don't need to hide what I think are my worst features and that I'm worthy of acceptance with my condition. It feels odd to say it now, but before the Wren Project's intervention I definitely felt as if I didn't really have much to offer society, to a workplace, or to my partner. I have since learned that none of that is true, and the Wren's input was the catalyst for that.”  

 
 

  • It took two years from my first asthma attack to my final diagnosis of Severe Eosinophilic Asthma. My breathing difficulties were pretty much constant, and I carried on as normal, thinking I was getting less fit. This caused my heart to compensate for my lungs and I developed a minor secondary condition called Left Ventricular Hypertrophy. Finally they tested my eosinophil count and my consultant said it was "through the roof". I was diagnosed with Severe Eosinophilic Asthma

  • I was told that I would need to take immunosuppressants every other month for the rest of my life. I had held pipedreams about moving my family to Canada. But it took me two years to get access to the treatment I needed in my native country, starting that journey again seemed like too big a hill to climb.

  • From a friend from childhood had an autoimmune condition, alopecia, so we chatted about our common ground.

  • It was the start of a long journey of self-acceptance that I'm still on but it has been a powerful force for change in my life. The Wren Project allowed me space and time to talk and be listened to entirely without judgement, or feeling the need to try to impress. I was afforded the opportunity to just talk and splurge out my thoughts without having yet made sense of them. My listening volunteer was amazing at helping me to realise that I actually held the answers to some of my problems.

  • But I feel very much as if I have the tools I need to tackle the challenges ahead in my life. I found having my thoughts reflected back to me so powerful, and now I keep specific journals of my thoughts on various subjects. And at any time, if I need to check back in with my thoughts on those subjects it’s all there on those pages

“I had hoped that I would find a way of beating my condition. I have since learned that the best approach is not to waste time trying to beat a part of myself, but to learn to accept it and to move forward.”