Living with pulmonary hypertension: a real testimony told in the first person – News

From the moment I came into the world, Pulmonary Hypertension (PH) became a constant companion, a shadow that accompanies me in every moment of my life. However, during my first 10 years, I did not know its name, nor did I understand its complexity.

The symptoms of pulmonary hypertension have often been attributed to other conditions. I never imagined that behind these signs, such as shortness of breath, fatigue, and the bluish color of lips and hands, there was a rare and intricate disease, which would profoundly affect my life in every aspect.

It’s true, children’s resilience in the face of illness is often admirable. They find ways to adapt and overcome obstacles, struggling to fully integrate into society. However, as they grow into adults, they face new challenges that can test this resilience in different ways.

Confronting the impossibility of realizing certain dreams, such as becoming a mother, is a painful reality for many women diagnosed with PH, which contraindicates pregnancy. It is a profound loss, a silent mourning for the children who will never be conceived. Furthermore, emotional relationships can also be affected, as the disease can impose physical and emotional limitations that make it difficult to maintain healthy and satisfying relationships.

In the professional field, the complexity increases even more. Working with a debilitating medical condition can be challenging, requiring ongoing adaptations and facing stigma and misunderstanding from colleagues and employers. People with chronic illnesses often face discrimination in the workplace, whether because of frequent absences due to medical treatments or because they are unable to perform certain tasks due to their health condition.

The challenge of living with pulmonary hypertension goes beyond its invisibility to the eye. It’s a daily battle against physical limitations, which prevent us from carrying out the simplest activities without effort. It is a constant mental struggle against depression, anxiety and the emotional upheaval that accompanies the awareness of a condition that threatens our normality.

Therapy for PH, whether oral, subcutaneous or intravenous, brings with it a heavy burden of adverse effects. Anyone who faces this reality knows that it’s not just about swallowing pills or administering injections; it is enduring crippling pain, which constantly reminds us of the price of hope.

The logistics of managing medication become a complex art. From meticulous care when bathing, to precautions when going out and traveling, each step requires meticulous planning. Those living with HP become experts in time management, juggling between domestic tasks and work demands, always under the oppressive weight of the disease.

In this context, it is essential that there is adequate support to help adults facing these challenges. This includes access to specialist medical care, emotional and psychological support, as well as inclusion measures in the workplace and wider society. It must be recognized that people with chronic medical conditions have much to offer and deserve to be treated with dignity and respect, regardless of their physical limitations.

A patient’s journey from childhood to adulthood is filled with unique challenges, but also opportunities to grow, learn, and find meaning even in the most difficult circumstances. It’s important to remember that resilience is not just about overcoming adversity, but also about accepting reality and finding ways to live a full and meaningful life.

On this World Pulmonary Hypertension Day, I invite you to look beyond the surface. Recognize the bravery of those who live with this invisible, but no less real, condition. Understand that behind the forced smiles and deceptive appearances lies an unbreakable strength, ready to defy all odds.

Because, at the end of the day, what we want most is simply to live a full life, without HP stealing our essence!

An article written by Rita Rodrigues, dPulmonary Hypertension patient and member of the Portuguese Pulmonary Hypertension Association.