Tuberculosis in First Person

A window with rain on it, a quote over it reads "Sadness made one interesting."

"Sadness made one interesting," said Susan Sontag in her book “The Illness and Its Metaphors.” And it is even more interesting if you are a student of social sciences, and you work in the writing of a newspaper. In those undergraduate years, melancholy was a part of me, and coughing was not uncommon in a city where smoking was not questioned. I was a secondhand smoker going about my life among heavy smokers in the newsroom. I was a person affected by Tuberculosis.

How did I get it? A series of social determinants appeared simultaneously: irregular eating and working endless schedules; closed spaces with little ventilation and lack of daylight (both in the university classroom and in the newspaper office); exposure to the risk of contagion when volunteering with street children; a weakened immune system (the year before I was diagnosed with juvenile rheumatoid arthritis).

Could I get over it? Of course. My family faced the costs of daily medication and improved nutrition, among others. They also decided to take all care measures for themselves, but stayed by my side. The emotional support of the family is of the utmost importance for a person who must receive daily medication (in my case, for 6 months). The distant support of some university colleagues also strengthened me, sharing class notes and agreeing to let me continue in working groups and contribute to discussions by letter or by phone. More difficult was overcoming my own self-discrimination: the shame of having contracted this disease kept me silent about my diagnosis for many years, as well as the guilt for "allowing it to be transmitted to me." At that time, I did not know that tuberculosis was an endemic disease with high incidence rates and active transmission that could impact anyone.

After finishing my studies and having taken the path of health communication, I had the opportunity to share about my past diagnosis of TB with a group of health promoters while developing self-training materials on tuberculosis for community agents. The catharsis experienced by sharing our stories and knowing that the lack of information in the general population remained, as well as the difficulties people had with adhering to their treatments, clearly showed me the need to work in this field.

TB was and continues to be a challenge to overcome. It is a challenge for many reasons, including the lack of information or misinformation, the insufficient involvement of local authorities in the development of prevention measures, and due to the resistance of some authorities to incorporate the scientific evidence that clinical trials provide to make decisions regarding changes in schemes, duration of treatments, and the development of new vaccines. The process is long, but the satisfaction will be great when, hand in hand with the affected people, we achieve more informed communities and see access to new treatment options, vaccines, and prevention measures that science can offer us.

MaR León is the Head of Community Involvement at the IMPACTA CTU in Lima, Peru.