This blog post was written by Ingrid Oxley, a dietician, research assistant and anti-TB advocate from South Africa. She recently participated in a media champion training program organized ACTION this February. Her op-ed was originally posted on the Huffington Post on World Tuberculosis Day (March 24th).
I was used to treating patients with tuberculosis (TB) in hospital settings where I worked as a dietitian. I encouraged patients to eat their food and drink nutritional supplements because I was certain this would help with their recovery. What I didn’t fully appreciate then is that being sick changes one’s perspective, and not having an appetite really makes daily tasks like eating seem like unfair expectations. I experienced this firsthand when I was diagnosed with TB in 2011 and drug-resistant TB in 2012.
As World TB Day approaches, March 24, I reflect on my experiences to call attention to the prevalence of TB that causes so much suffering in this country [South Africa].
People were surprised to learn I had TB, almost like I did not fit into their perception of what a patient with the disease should look like. This is not surprising with a disease with so much stigma attached to it. Because the disease was traditionally associated with poverty, people with TB are often ashamed and go to great lengths to keep their condition to themselves. This is the last thing that patients should be doing since it not only denies them the support that is essential to their recovery, but they also put families, friends and communities at risk of contracting the disease from them, if they are infectious. The reality is that TB is an airborne disease; anyone can contract it.
Without the support from family and friends, I would have given up. I realized the importance of social support in the fight against TB.
I was hospitalized over two months, both from the disease itself and from the side effects of the medicine which included constant nausea, vomiting, diarrhea and later liver failure. It would take me to the edge of death before it was all over. I suffered liver failure and fell into a coma; then my doctor phoned my family to come and say their goodbyes. Taking the TB treatment was extremely challenging. My arms turned blue from having blood drawn frequently to monitor my electrolytes, and I suffered nightmares and cried a lot, unlike my usual self. It was overwhelming to realize that the treatment was just beginning and had to be taken for two years. Without the support and kindness from family and friends, I would have given up. I realized the importance of social support in the fight against TB.
Today, I am fully cured and healthy. I am happy to feel like my old self again, to have loads of energy, be able to work again, and to have the opportunity to express gratitude to my family and friends who loved and supported me through my illness.
Most of all, I am grateful for the chance to turn adversity into an opportunity to make a difference. As an advocate for TB education and treatment, I now lobby for increased investment in TB research to improve outcomes for those with the disease and to reduce the stigma that prevents too many from seeking treatment. And as a health care professional, I have the opportunity to educate the public about TB and to contribute to the international goals of eliminating the disease in the shortest possible times — by 2030 as set by the World Health Organization.
I am especially passionate about the need for new research that can provide a framework in which community members are actively involved in the research process as partners. The people most affected by the scourge of TB need to be involved with researchers, health workers, leaders in the communities, and politicians who are all working to make a difference.
As an active member of TB Proof, a South African organization involved in TB advocacy, I have learned that each person’s story and experience is valuable and that fighting TB is a worthy cause. My involvement with ACTION, www.action.org, including my recent media training in Paris, France, has equipped me to be a better advocate on all our behalf.
Now more than ever, it is important that we unite to end TB!
This post is part of the ‘Tuberculosis Today’ series produced by The Huffington Post highlighting the challenges of combatting TB. Tuberculosis is now back in the top ten causes of death globally, and it is the world’s leading infectious disease killer despite being curable and preventable.