Showing compassion to those with tuberculosis

World Tuberculosis Day is Wednesday. It doesn’t take much searching within one’s family tree to discover that TB most likely impacted a distant relative. Or perhaps a not-so-distant relative.

My grandmother was admitted to the Firlands Tuberculosis Sanatorium in Shoreline 65 years ago. My mother, then 10 years old, was only allowed to visit her on infrequent weekends while standing outside the sanitarium building and gazing into my grandmother’s window. This continued for four years. My grandmother slowly recovered from TB, losing a lung in the process, and upon returning home constructed a new, yet fractured relationship with her then 14-year-old daughter.

Fast forward 65 years and we can unfortunately state that TB continues to impact individuals, families and communities, locally and globally. The World Health Organization estimates that nearly 4,500 people die every day from TB.

Compared with the number of people who have TB in developing countries — where TB is at epidemic levels fueled by poverty, lack of accessible TB medicine and effective diagnostic tools — Snohomish County had a relatively modest total of nearly 30 cases of TB in 2009.

Yet every person or group of persons with TB is significant for two reasons: First and foremost, if it’s someone you love, you’ll want them to be cared for and fully treated, not only with the proper medicine, but with respect by the community rather than shame. Secondly, if a person with TB is not supported by their family and community, the treatment process becomes more challenging, as does the prevention of this disease.

TB is a bacterial infection that is preventable, treatable and curable. It usually infects the lungs, but can circulate to almost any part of the body. When the infection begins to worsen in the lungs, the person can spread the disease by simply exhaling. When others breath the same air, TB can spread into their bodies.

TB does not discriminate. If you breath, you can become a host if exposed to the bacteria. This does not mean we should be fearful of those with TB; we simply need to understand the disease and be aware of how we as a community take care of people who have it.

TB prevention is successful when there is quick and accurate diagnosis, followed by adherence to the treatment protocol. Unlike other bacterial infections, for which most of us are accustomed to taking a two-week course of antibiotics, TB treatment can take 6-18 months. TB patients take a handful of drugs, often with unpleasant side effects, every day for months at a time. The treatment can cause them to miss work, school and time with their family. Because of this, people with TB need our communal support.

TB has been around since recorded history began, affecting relationships within families and communities. What doesn’t need to be passed down through another generation is the fear and stigma associated with TB that is pervasive in all cultures, including our own, allowing TB to be spread and improperly treated. A lack of new antibiotics, access to care, drug resistant strains of TB and antiquated diagnosis tools are the main factors that the medical community points to when explaining why TB hasn’t gone away. But complex social factors loom over the disease, too.

When attending conferences on TB in Washington and overseas, I often hear the laments of TB medical experts who want people affected by the disease to come forward and be part of the global effort to eliminate it. Yet, TB is a complicated disease, one cloaked in personal and community shame and stigma.

On a recent flight, the young woman sitting next to me shared that she was diagnosed with TB and treated five years ago, but she never told even her closest friends and family out of fear that they would reject her, or that the media would put her in the spotlight. She lived in isolation with her secret, afraid that she would not be supported by the people who loved her and her community.

This is a very common experience for those with TB; people who simply have breathed in air with bacteria that make them sick. The universal stigma undermines efforts to eliminate global TB. We as individuals and a community can change this.

When we take the time to personalize TB, to imagine that if one of our loved ones became infected with TB we would want to support them in any way possible, the stigma of TB will disappear and we can begin to make real progress toward its eradication, locally and globally.

Not if, but when the media turns our attention to the disease while reporting on a local case here in Snohomish County, let’s be prepared. Prepared to respond collectively to persons affected by TB with compassion, not fear; support, not isolation.

Teresa Rugg is project director for TB Photovoice, an organization working with persons directly affected by tuberculosis. She is also the group leader of the Snohomish County RESULTS group. Contact her at twrugg@verizon.net.