On a daily basis, I live with a sense of survivor’s guilt.
There is not a day that goes by that I don’t think about my experience with tuberculosis (TB), which I contracted at the age of 18. The experience was incredibly traumatising. Over the years, I have developed a sense of gratefulness, however, because it has given me the insight to realise how privileged I am to live in a developed country like Australia.
Despite contracting the disease, I remain one of the lucky ones. I was fortunate enough to be living in a country where I received the best medical treatment possible. Millions are not so fortunate.
I was tested four times, in four different labs for TB, over the course of four months and, after being told I might have to have part of my lung removed, my TB diagnosis was confirmed. In the end, I was able to be treated without surgery. At the time of my diagnosis, I was also suffering from anorexia nervosa and my immune system was weak. I was given antibiotics through intravenous, as well as many TB tablets daily.
The 18 months I spent sick with TB and in recovery were a huge struggle. I was battling both an eating disorder and TB. I had developed all of the main symptoms of TB, which included severe night sweats, coughing up blood, fever, chest pain, fatigue and weight loss. I was isolated, scared and descending further into the depression I already had. I felt like giving up and if it wasn’t for the support of my amazing family, I probably would have.
Demi Mason contracted TB at the age of 18. She shares her story in the hope that opening up the conversation around TB will reduce stigma and increase awareness.
I have spoken about my personal experience with TB a few times before. I am aware that to some my narrative may seem like a sob story from a privileged girl living in a country where I face no real societal backlash as a result of speaking up. However, initially I was still afraid to open up about having the world’s number one most infectious disease. Somehow the stigma of this centuries-old illness found me voiceless for a period of time. I can also say that in my own experience, this stigma was also attached to the fact that the reason I developed TB was due to my eating disorder — another stigmatised issue. For me, raising my voice against the stigma of TB also meant raising my voice against the stigma of mental health, the latter being much scarier in my world. In my opinion, stigma is one of the main reasons that TB is still very much prevalent throughout the world and this is something I aim to change.
The surprising — or not so surprising — discovery I have made by talking about TB with people in my community, is that many don’t even know what TB is or that it is still a major illness. I shouldn’t be shocked as I myself was naïve enough to think that it was mostly eradicated. This is a common misconception for a number of reasons. The first is that because there is stigma associated with infectious diseases, no one speaks about them, and second, the number of people who contract active TB is relatively low in developed countries, such as Australia, compared to more vulnerable developing ones. As a result, an attitude of “what we cannot see, does not affect us” becomes apparent. This could not be further from the truth and has become evident with the recent events that are taking place with the COVID-19 pandemic that has hit almost every country — no matter the status of their development.
A health worker gives a shot of BCG vaccine to 2 month old Sumon in a basic health unit in Sindh province, Pakistan. The BCG vaccine is primarily used against tuberculosis. Image credit: Gavi, the Vaccine Alliance.
I share my story because I am privileged enough to do so. By opening up the conversation around TB, I can help reduce the stigma by explaining to society that anyone can contract this disease. In saying that, I do not wish or aim to be a voice for others, I only hope to use my voice to support those who cannot use theirs at this present time or into the future.
I can’t do much from a scientific or medical point of view as that is not my area of expertise, but what I can contribute to and focus on is the human impact, something that I feel is sometimes forgotten among numbers and statistics. We forget that those figures represent real people in communities just like our own. They are people with families, children, brothers, sisters and friends. A third of the world’s population, approximately 2.5 billion people, is infected with inactive or active TB.
According to the World Health Organisation, TB is the leading and number one infectious disease on the planet and is among the top 10 causes of death worldwide. I say this, not to create fear, but instead to create action. We have a cure, which means as a global society we can help our fellow humans. In the 21st century, people should not be dying from something that is preventable or curable.
The COVID-19 pandemic reminds us of the need to invest in our health systems, as well as in research and development to stay ahead of the game. For TB specifically, we need more resources in research and development so we can have access to quicker diagnosis, shorter treatment duration and most importantly, a vaccine that is more reliable in order to prevent the disease in the first place. We also need to put pressure on our governments to continue strengthening our global health systems to avoid future catastrophic pandemics.
This article has been edited and condensed for clarity.