‘I have faced many challenges…one of the greatest was not being believed’

A woman living with Crohn’s disease who experienced symptoms for over 30 years, has revealed one of the greatest challenges she faced on her journey to diagnosis was “not being believed there was a bigger issue going on.”

Speaking to the Wren Project as part of the Wren Voices campaign - an initiative to amplify the voices of people living with rare and often invisible diseases - Suky told us at times there were “suggestions it was a mental health symptom.”

“There are many challenges that I have faced,” she told us. “One of the greatest was not being believed that there was a bigger issue going on; being dismissed; suggestions that it was a mental health symptom.”

Suky first started experiencing symptoms over 30 years ago.

“My symptoms started over 30 plus years ago. I was in my early 50s when I was diagnosed, [but] my symptoms were occurring in my 20s,” she explained.

“They were mild at first and then became what doctors described as moderate IBS. Over the years, it was put down to nothing more than that and so I learned to manage it by adjusting my diet, avoiding anything that was a trigger.”

Suky went on to pay privately for tests, which eventually showed a diagnosis of Crohn’s.

She added: “Forward to current time, [I] paid privately to try and find out what was wrong, it was discovered that I had Crohn’s disease.”

Speaking about life with Crohn’s, Suky said her diagnosis has taken its toll on all areas of her life.

“It has affected my life socially, economically, physically, mentally and emotionally,” she told us.

“Every day I must adapt to how the condition is on the day and [have trialled] many treatments to find the right fit.

“I am still learning daily what this condition does to the body, and not just the gut, but the whole digestive system,” she continued.

“It also affects the eyes, mouth and skin. In addition to this, the emotional and psychological toll it takes on the individual.”

Suky received one-to-one support from us here at the Wren Project, having been referred on from another charity.

Speaking about her experience of listening support, she said: “I can honestly say that I felt heard, listening to, safe, respected and seen.

“I felt that I could just be open about what I was dealing with at the time. I can’t say thank you enough.”

Sharing her thoughts for anyone newly-diagnosed, Suky said: “For someone who has a recent diagnosis of an autoimmune condition, take it one day at a time, and reach out to people/ organisations who offer a safe space to feel heard and seen.

”The Wren project is here for you whenever you are ready.”

Suky added that her time being supported by the Wren Project has meant she feels inspire to volunteer one day.

”The Wren Project has inspired me to consider signing up to become a volunteer when I am at a place in my journey to do so. It is a way that I can give back and help someone else through their journey.”

Suky’s story is part of our #WrenVoices campaign, where our Wrens share their personal experience of life with autoimmune disease. Would you like to share your story in our Wren Voices campaign? Get in touch here.

Here at the Wren Project, we are here to support you. If you or someone you know could benefit from our free, one-to-one listening support sessions, please get in touch here for support.