Hidden Disabilities: Craigavon woman Leonie on life with Ulcerative Colitis

This is part two of our ‘Hidden Disabilities’ video series, in partnership with Duality Healthcare.

Leonie Gracey from Craigavon was 25-years-old when her life changed.

Leonie, now 32, became unwell, initially expecting it to be a tummy bug. Her stomach was sore, she was going to the toilet more often and she was unable to eat or drink.

After around ten days, she decided to visit her GP who sent her to the hospital for additional tests, where they found that her colon was covered with ulcers.

Within two weeks of becoming unwell, Leonie was diagnosed with Ulcerative Colitis.

For part two of our ‘Hidden Disabilities’ video series, in partnership with Duality Healthcare, we spoke to Leonie about the condition and the impact it has had on her life.

“Ulcerative Colitis is a form of inflammatory bowel disease,” she explained. “It’s an autoimmune condition whereby your immune system doesn’t recognise healthy cells and essentially attacks itself.”

After the diagnosis, Leonie was introduced to a team of dieticians and specialists to help her for the road ahead.

“I suppose it was a big learning curve really… Part of the condition involves needing the toilet quite a lot, but there’s a lot of unknown symptoms that go hand-in-hand with Ulcerative Colitis.

“I had really painful, inflamed and swollen joints, I was suffering from fatigue, my hair was falling out and I was struggling to absorb nutrients, so i was learning how to manage my diet and lifestyle alongside the medication.”

As part of her life in managing the condition, Leonie needed to adapt her diet, alongside having to live with an Ileostomy.

However, it was a hard road to follow.

“It took me about four-and-a-half years to get into remission and for me to get to that stage I needed to have a couple of surgeries.

“The disease was progressing and my body wasn’t responding to the medications anymore so I needed the surgeries.”

Leonie has described her surgeries as a “U-turn” moment in her life, allowing her to “get my life back”.

She explained: “Learning to live with a stoma was a learning curve in itself, but it gave me a lot more freedom and a lot more flexibility.

“My life was dictated by where the nearest toilet was and how far I had to go. Now I feel I can leave the house with a lot more peace of mind. For me now there’s a lot less worry and anxiety.

“I’ve had my stoma for five-and-a-half years and I have to say it’s been brilliant. I’m really grateful and thankful every day for it.”

Leonie says that the challenges she faces aren’t always clear to people.

“When you don’t necessarily look unwell a lot of people would see you’re fine to do all these things but what I have found from joining the chronic illness community is that people with chronic illnesses don’t have the same energy reserves.

“So I have to pick and choose how I manage my time and my energy because it is so precious and I suppose you’re stretching yourself across so many different aspects of your life.

“I’m a person who lives with this, it doesn’t live with me and I think a lot of people can get bogged down and they think of this as my whole identity and it’s not really.

“You’re still there. You’re still the person underneath.”

‘Hidden Disabilities’ Episode One: How NOW Group helps people with learning difficulties get into the workplace