Issue link: https://maltatoday.uberflip.com/i/1503368
8 maltatoday | SUNDAY • 9 JULY 2023 NEWS IN the demanding world of pol- itics, appearance is important but for MPs like Katya De Gio- vanni this can be deceiving. The Labour MP has been bat- tling Crohn's disease for years – an invisible disability that can lead to embarrassing situ- ations. She recently came across a disheartening moment when someone in parliament re- marked on her visibly ailing condition while she was fulfill- ing 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 mo- ments. Katya's experience sheds light on the often-overlooked strug- gles of individuals living with invisible illnesses, even in the realm of politics. At the peak of her political ca- reer, Katya's resilience has be- come a source of inspiration for many, but Katya was not always as comfortable with her disease. Her journey with Crohn's dis- ease 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 excruci- ating levels, compelling her to seek medical attention. Anti- biotics offered temporary res- pite, 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 driv- ing, I would have stopped by the side of the road and waited for the spasm to pass," she rem- inisces. While the news came as a re- lief, 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 re- ceived my MRI results confirm- ing my diagnosis. I sat down on the staircase, for three whole hours, searching and googling Crohn's disease." Crohn's disease is a chron- ic inflammatory bowel disease (IBD) that primarily affects the gastrointestinal tract. It causes inflammation and irritation in various parts of the digestive system, most commonly oc- curring in the small intestine and the beginning of the large intestine (colon). However, it can affect any part of the diges- tive 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 predis- position, an overactive immune system, and environmental fac- tors. The immune system mis- takenly attacks the healthy cells in the digestive tract, leading to chronic inflammation, ulcera- tion, and thickening of the in- testinal walls. "Despite not being as intense as the chemotherapy admin- istered to cancer patients, the treatment for Crohn's disease still involves low-dose chemo- therapy," 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 for- ward," she says with determina- tion. 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 obliga- tions towards constituents." Her husband, children, and extended family provide unwa- vering support, easing the bur- den of her condition. But flare-ups can be unex- pected, 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 pre- pare myself by being mindful of my diet," she explains. Kat- ya tells me that during recent flare-ups, despite the hot tem- peratures, 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 gradual- ly acquire the necessary knowl- edge and skills to navigate the journey with Crohn's disease." Katya's personal journey with this disease has fuelled her pas- sion for disability rights and ad- vocacy. She recognised the need for increased awareness and sup- port, 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 ob- tain 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 illness- es. But she hopes to use her po- litical platform to lift the veil of invisibility. Beyond politics: Katya De Giovanni's fight with Crohn's Disease Labour MP Katya De Giovanni speaks to MARIANNA CALLEJA about her journey with Crohn's disease and her fight for more inclusivity by lifting the cloak of invisibility Katya De Giovanni during a chemotherapy session