Most 23-year-olds are planning holidays, trips with friends or their first career moves.
Before saying “yes” to a night out, Loukas Papacharalambous thinks about something much simpler, and at the same time much more difficult.
Whether he will be able to leave the house without his body betraying him.
Whether he will find a toilet when he needs one.
Whether the pain will allow him to stay until the end of the evening.
To most people, he looks like a healthy young man. There is nothing about him that reveals he is fighting a daily battle.
And yet, for the past six years, he has been living with Crohn’s disease, a chronic inflammatory bowel disease that changed his life from one day to the next.
“I was 17 when it all started,” he recalls.
At first, severe pain and bloody bowel movements appeared. For quite some time, however, nobody could explain what was really happening.
The initial diagnosis was internal haemorrhoids.
The symptoms, however, not only failed to improve but became increasingly severe.
“I lost about 15 kilos. I had become so thin that when I finally went to the Emergency Department, I remember someone saying to my mother that this child is really sick.”
His hospitalisation lasted ten days.
It was there that everything he had been going through was finally given a name.
Crohn’s disease.
Summer means hospital
Since then, his life has been divided into periods of remission and flare-ups.
And, as he says, there is one time of year he no longer looks forward to.
“For most people, summer means holidays. For me, it means that the symptoms usually become more intense. Almost every summer I end up in hospital.”
That means even simple planning becomes difficult.
A trip is not something he can take for granted.
A night out with friends is not something decided spontaneously.
Even work is accompanied by anxiety, since a flare-up of the disease can force him to be absent or interrupt whatever he is doing.
“You lose opportunities. Social opportunities, professional opportunities. Things that are normal for other people require a second thought for us.”
Daily life becomes restricted, often without the people around him even realising it.
Even simple household tasks can become difficult when pain intensifies or fatigue becomes overwhelming.
“You constantly have it on your mind when you leave the house. Whether the pain will appear. Whether you will be able to continue your day. That anxiety is always there.”
Specialist care is needed
Crohn’s disease leaves no visible signs.
And perhaps that is one of the biggest problems.
“People don’t know what it is. You don’t look like you have anything wrong with you. Many people don’t understand what you’re going through.”
As a result, many patients choose silence.
“There are people who do not even tell their employers they have Crohn’s disease. They are afraid of how they will be treated.”
Loukas believes the lack of awareness creates stereotypes and makes life even more difficult for patients.
“There needs to be greater awareness. People need to learn what this disease is and what it means to live with it.”
The disease affects far more than the body.
It affects mental health, self-confidence and the way a person views the future.
Loukas believes that Cyprus lacks psychologists with meaningful expertise in Crohn’s disease, either within or outside the General Healthcare System (GeSY), leaving many patients without the support they genuinely need.
“It’s not only the pain. It’s everything you carry with you every day.”
He also speaks of the need for greater specialisation within healthcare services.
As he explains, gastroenterologists do exist, but he believes patients with Crohn’s disease require a more specialised approach, particularly when hospitalisation is needed.
He notes that patients are often admitted to general wards, increasing their concern about infections, especially when they are receiving immunosuppressive treatments.
A further burden, he adds, is the financial cost.
The specialised diet often required, medical tests and other disease-related needs place significant pressure on household budgets.
Despite the difficulties, Loukas refuses to remain silent.
Instead, he wants to talk about them.
“When you discover it, you are frightened. You think your life is over. It isn’t. It takes time to accept it, patience and the right people by your side. Your doctor, your nutritionist, people who understand the disease and can support you.”
Because, as he says, the greatest battle with Crohn’s disease is not always fought in a hospital.
It is fought every morning, when a young person tries to live as normally as possible with an illness that most people cannot see, but one that he can never forget.
More than 8,000 Cypriot patients
More than 8,000 people in Cyprus, including children, are currently estimated to be living with inflammatory bowel disease, namely Crohn’s disease or ulcerative colitis.
The number has been steadily increasing in recent years.
According to Natasa Theodosiou, president of the Cyprus Association for Ulcerative Colitis and Crohn’s Disease (PASYEKK), behind every diagnosis lies a daily reality filled with “invisible difficulties”.
“Many patients struggle to explain to their employers what a flare-up means or why they need immediate access to a toilet and frequent absences from work,” she says.
Particular problems are faced by patients receiving intravenous biological therapies in hospital, as they are required to be absent from work without any special provision being in place.
The association is calling for the introduction of a special leave entitlement so that treatment days are not deducted from employees’ annual leave.
Call for a specialised day care centre
According to Theodosiou, PASYEKK’s most urgent demand is the creation of a specialised Day Care Centre within public hospitals.
Today, when a patient experiences a flare-up or complication, they are often forced to attend Accident and Emergency Departments.
There they face long waiting times, a lack of specialist care and an increased risk of exposure to infections.
“There are patients who, because of this ordeal, avoid seeking medical help altogether,” she says.
The proposed centre would include:
- A gastroenterologist.
- Specialised inflammatory bowel disease nurses.
- A clinical psychologist.
- A dietitian.
- An endoscopy unit.
- An infusion area.
- Short-stay hospitalisation facilities.
Recognition as an invisible disability
At the same time, the association is calling for inflammatory bowel diseases to be recognised as an “invisible disability”.
Such recognition would provide patients with meaningful workplace and educational accommodations, access to social benefits and greater understanding from society.
