Shining a light on an invisible illness

We associate illness with weak, pale, and fading bodies. These are reinforced by art and mass media, from paintings to television, and now with all the suffering from COVID-19 that has amplified such images in our mental space.

Yet a conundrum exists for millions of people around the world with invisible illnesses, such as Inflammatory Bowel Disease (IBD). The two common types of IBD are Crohn’s Disease (CD) and Ulcerative Colitis (UC), which are marked by inflammation mainly in the digestive system but can also affect other parts of the body. Crohn’s may affect any part of the gastrointestinal tract from the mouth to the anus, while UC is confined to the colon.

People with IBD may appear healthy and functioning like any normal individual. However, beyond their normal appearance are constant struggles with excruciating stomach pain, hours spent in the restroom, bloody stools, mouth ulcers, and joint pains, among others. Many brave going to work every day just to survive, given the high cost of medication and treatment. This is especially true in a country like the Philippines where health costs are mainly shouldered privately by individuals and families. Many patients are in their 20s, 30s and 40s—the most productive age in a person’s life. A significant percentage have undergone multiple surgeries, and some endure almost monthly stays in hospital. There is an alarming trend for many newly industrializing countries like the Philippines where a significant increase in IBD cases has been recorded in recent years.

This Christmas, we are reminded of the redemptive power of compassion. We are called to partake in the creative process in mending the brokenness in creation by alleviating human suffering. Oftentimes, suffering is invisible to the eye. Those who suffer from invisible illnesses like IBD are everywhere. They can be your colleague at work, the person next to you in a restaurant, or a schoolmate who often disappears in class—spending hours in the comfort room dealing with constant diarrhea. They could be your neighbor struggling to keep up with finances for treatment and care.

While many of us wish for a variety of material things this Christmas, others are asking for a momentary relief from ill health. If you know their story, reach out to them, listen to them, and try to understand. If they are your classmates in school, try to advocate and ask others to be more considerate of them. If they are your colleagues at work, understand that in their moments of absence they may be struggling. A comforting word, some empathy, and a helping hand could mean the world to them.

However, individual compassion is not enough. Our public health system should recognize the suffering of those with invisible illnesses like IBD. Social safety nets including expanded PhilHealth coverage can go a long way in lessening the financial burden of many Filipino families who are suffering in silence. Investing in IBD patients is not a losing stream. If given the opportunity, many people with Crohn’s and UC can become productive members of society. With proper management, people with IBD can succeed in life.

Former Japanese prime minister Shinzo Abe is an excellent example of what patients can achieve when given the right opportunity. How many of our children with IBD can achieve so much when afforded proper treatment and care to lead healthy and productive lives? It takes compassionate actions in the everyday and systemic changes in our policies to give IBD patients a chance in life.

From Dec. 1 until tomorrow, Dec. 7, it’s Crohn’s & Colitis Awareness Week. Let us make this invisible illness visible, and shine light on the lives of patients and their families.

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Ron Jay P. Dangcalan (rpdangcalan@up.edu.ph) was diagnosed with Crohn’s Disease in 2019. He is a political economist and assistant professor at the Department of Social Development Services, College of Human Ecology, University of the Philippines Los Baños.