The National Catholic Bioethics Center

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Solidarity Heals Isolation of Rare Disease

Image by Thirdman.

By Colten Maertens-Pizzo

In a February 13, 2023, address to Uniamo, the Italian Federation for Rare Diseases, Pope Francis explained that suffering provides a unique opportunity for unity. His message is especially timely because the world tends to see suffering as something to be avoided at all costs rather than as a possibility for hope. As with many of the Pope’s speeches, he intends to reach beyond his immediate audience and share his message with the wider world.  

Francis joyfully praises the association for its choice in name and theme, Uniamo, which means “let us unite.” The choice is especially fitting from a Christian perspective because it is precisely through the anguish of Jesus Christ on the Cross that suffering transforms into a means for unity. Admittedly, Francis leaves much of this theological background unsaid. Nevertheless, this speech encourages all who suffer from illness to endure their suffering in the manner of Christ —that is, together.

“Let us unite our experiences,” Francis rightly proclaims, “let us unite our strengths, let us unite our hopes.” Importantly, hope is borne from the struggle for life. However, it cannot develop properly without a firm basis in solidarity. As he explains, sharing begins for human beings by necessity but then becomes a choice. For example, “when a father and a mother discover that their child has a rare disease, they need to meet other parents who have lived and are living the same experiences.” But their desire for support can become something more as their hearts open to the possibility of seeing suffering in a new way: “Gradually,” the Pope says, “the way of sharing becomes a choice.” In other words, their motivation transitions from the fulfillment of the couple’s individual desire toward a broader solidarity with others.

Christ’s passion incited this fundamental change in human experience. Where once suffering lorded over humanity, now it may strengthen those who bear it together. When everyone suffers alone, there is certainly no pleasure for anyone, because isolation breeds annoyance. But when experiences of pain are shared, they take on a new usefulness and importance for that person’s life. This is the usefulness of good friendships, of being with “people who until yesterday we did not even know, and who now confide their experiences to us to help us bear a very burdensome situation together.” Something of Pope St. John Paul II shines through this message.

In Love and Responsibility, Karol Wojtyla describes use as a deplorable treatment of the person as a mere object. However, he then continues to say that people can also use each other in a less deplorable way as sources of delight when they are recognized as both objects and subjects. If people truly take pleasure in human relationships, it is because they see the other as a source for delight. In other words, people can come to see each other as light amidst the darkness and isolation of sickness. Sharing, then, becomes something more than use born of necessity; it becomes a deeply personal, intimate opportunity for unity.

Francis rightly praises Uniamo for its emphasis on making policymakers aware of the needs of those who are sick. Fruitful policy depends on associations that “have the necessary knowledge and attention towards people who risk being neglected.” These organizations provide the needed “pressure to overcome national and commercial barriers to the sharing of results of scientific research.” By these actions, then, all associations in service to unity encourage changes to public and private policies that treat each person as a source of delight rather than as something to be used and discarded.

It is important to recognize that the task for associations like Uniamo is not easy. As Francis explains, “It is difficult to commit on behalf of everyone when you are already struggling to face your own problem.” He follows up this acknowledgement with encouragement, praising Uniamo for “[giving] voice to the many who, alone, would not be able to make themselves heard.” Certainly, suffering is burdensome, but it is also freeing for those who share their burden with others. Together they transform their suffering into delight and help to disburden the world of its anguish. All this is, of course, possible only because Christ has suffered alongside all of humanity.


Colten Maertens-Pizzo works for the Archdiocese of Chicago Catholic School System.

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