[WATCH] Beyond politics: Katya De Giovanni’s fight with Crohn’s Disease

In the demanding world of politics, appearance is important but for MPs like Katya De Giovanni this can be deceiving.

The Labour MP has been battling Crohn’s disease for years – an invisible disability that can lead to embarrassing situations.

She recently came across a disheartening moment when someone in parliament remarked on her visibly ailing condition while she was fulfilling her parliamentary duties.

“I was wearing a full face of makeup, but my stomach looked bloated, I looked like I had distention, and I was not well at all,” Katya tells me. It was one of those awkward moments.

Katya’s experience sheds light on the often-overlooked struggles of individuals living with invisible illnesses, even in the realm of politics.

At the peak of her political career, Katya’s resilience has become a source of inspiration for many, but Katya was not always as comfortable with her disease.

Her journey with Crohn’s disease began in her early teens when she first noticed blood in her stool.

The subsequent years were marked by intermittent bouts of pain and bathroom visits, especially during periods of stress.

Initially misdiagnosed with irritable bowel syndrome, she managed her symptoms while pursuing her education and starting a family.

“I remember having my son, my pregnancy was very healthy,” she explains with a smile of gratitude.

It wasn’t until her forties that the pain intensified to excruciating levels, compelling her to seek medical attention. Antibiotics offered temporary respite, but it was a specialist who correctly diagnosed her with Crohn’s disease.

“I remember the pain was so intense, that even if I was driving, I would have stopped by the side of the road and waited for the spasm to pass,” she reminisces.

While the news came as a relief, the weight of the lifelong condition settled upon her, leaving her shocked.

“I lived in a maisonette then; I was by the stairs when I received my MRI results confirming my diagnosis. I sat down on the staircase, for three whole hours, searching and googling Crohn’s disease.”

Crohn’s disease is a chronic inflammatory bowel disease (IBD) that primarily affects the gastrointestinal tract. It causes inflammation and irritation in various parts of the digestive system, most commonly occurring in the small intestine and the beginning of the large intestine (colon). However, it can affect any part of the digestive tract from the mouth to the anus.

The exact cause of Crohn’s disease is still unknown, but it is believed to result from a combination of genetic predisposition, an overactive immune system, and environmental factors. The immune system mistakenly attacks the healthy cells in the digestive tract, leading to chronic inflammation, ulceration, and thickening of the intestinal walls.

“Despite not being as intense as the chemotherapy administered to cancer patients, the treatment for Crohn’s disease still involves low-dose chemotherapy,” she tells me.

She has now accepted that this is an ongoing condition that she must learn to live with.

“Regardless of how busy life gets, pain becomes a constant companion, but the key is to persevere and keep moving forward,” she says with determination.

But navigating the delicate balance between managing symptoms and fulfilling her duties as a parliamentarian has been a challenge for Katya.

Drawing on her background in psychology, Katya tells me that she has honed the skill of delegation. “I have surrounded myself with a supportive team that helps me fulfil my obligations towards constituents.”

Her husband, children, and extended family provide unwavering support, easing the burden of her condition.

But flare-ups can be unexpected, and she recalls how at times she must cancel events because she feels fragile.

“I feel guilty. When I can’t continue with my activities, it brings about a deep sadness. However, there comes a point when I must draw a thick line with a marker and acknowledge that it’s time to rest.”

Failing to do so would hinder her ability to continue helping others. What hurts the most, she says, is that she knows her mind is resilient to stress, but her body demands that she pauses.

“To cope, I proactively prepare myself by being mindful of my diet,” she explains. Katya tells me that during recent flare-ups, despite the hot temperatures, she restricted her meals to nourishing broth and fish to aid her body’s recovery.

“It’s been a steep learning curve, but I believe that through perseverance, one can gradually acquire the necessary knowledge and skills to navigate the journey with Crohn’s disease.”

Katya’s personal journey with this disease has fuelled her passion for disability rights and advocacy.

She recognised the need for increased awareness and support, leading her to help with the Malta Association for Crohn’s and IBD.

Through the organisation, she is working to improve restroom facilities, develop ‘Can’t Wait’ cards, and empower individuals with invisible disabilities to obtain disability cards, fostering a more inclusive society.

Katya’s experience serves as a reminder that even behind the political facade lie individuals grappling with invisible illnesses. But she hopes to use her political platform to lift the veil of invisibility.