Why I’ve chosen to become a TB activist

This guest blog post was written by Demi Mason, who is a member of the RESULTS London group and is a TB survivor. Demi was born in Australia but now lives in London as a writer and activist. 

We live in a society today where people seem to have forgotten about a very real, impactful and highly infectious disease: tuberculosis. There is a complacency that has developed over time and an attitude that what we cannot see right in front of us does not exist. This attitude exists mainly in the western world where tuberculosis (TB) most definitely still occurs, only is much less common. In most less developed countries, TB is much more common yet there is a huge stigma attached to the disease that perpetuates the problem even further. In some cases, people who face discrimination are driven out of their homes and are less likely to seek help or even have access to proper care. This cycle continues where more and more people become infected, then develop a fear of judgement and persecution which inhibits them from seeking help. For many people, TB is a disease of the past, due partly to the taboo surrounding it, which has resulted in people not thinking and/or talking about it, even though it is very much a present day deadly disease. Not many would actually realise that tuberculosis is a world wide pandemic and that it is crucial for everyone in society to know this.

I have written this article to highlight the reasons why I have chosen to become a TB activist and campaign for TB eradication. I want to advocate on behalf of the people who do not have the privilege or societal ability to use their voice at the present time. It is my hope that by starting the conversation and by sharing my story, I will be able to help bring some much-needed attention to reducing the stigma associated with this disease. At the end of the day, tuberculosis doesn’t discriminate. We, as human beings, are all at risk no matter our class, race, gender, sexual orientation and so on.

TB has been curable since the 1940’s yet it still kills millions of people around the world every year. It is the number one infectious disease, killing more people than HIV and Malaria combined, around 4,500 every day. For reasons that are varied, this extremely widespread disease has been pushed, in my opinion, to one side and under a thick rug of shame resulting in a mutated form of TB, known as multidrug resistant tuberculosis or MDR-TB. This is why education is so important and the need to correct any misinformation about the disease because, as I indicated before, TB does not discriminate and only affect those living in poverty. It is a disease that is passed on through the air, that could infect any susceptible human being on the planet. This is also amplified by the fact that with our current climate and generation of globetrotters, the spread of disease is that much more probable. 

In 2012, I fell ill and after a gruelling four months of night sweats, fever, chills and coughing, was finally diagnosed with Pulmonary Tuberculosis. I was shocked and also extremely scared. I knew what TB was but like many, with my confessed ignorance, thought it had been eradicated from developed countries. Due to a delay in my diagnosis, I was subjected to a long antibiotic drug regime. Along with intravenous antibiotics, administered through a tube that threaded up through my left inner arm and down near my heart, I was taking six tablets per day. I had just turned 18 about a month before the symptoms started to show. It was my year to make a change and pull myself out of an aggressive eating disorder (Anorexia) that I had been afflicted with for three years. I was very much aware of the ways anorexia could have taken my life. The possibility of heart failure, multiple organ failure, and other potential complications, even depression leading to suicide, but never an infectious disease. If you are reading this and you have a loved one who has an eating disorder, cancer or any other illness that affects overall immunity, then they are one of those at high risk of developing active TB. This probably is not something you would think of yet is a very real possibility.

Even after these experiences, I am definitely one of the lucky ones! I am a survivor and was fortunate enough to have lived in a country where I had access to incredible medical attention, medical insurance and the support of a loving family, without whom I would probably not be here today. There were many times, never spoken too loudly, that I wanted to give up but I kept pushing through. I had dreams and aspirations that I knew I couldn’t achieve if I let TB and anorexia beat me. Now, try to imagine the feeling of hopelessness that someone suffering from TB might feel who is lacking affordable treatment, sufficient medical attention, education, access to proper nutrition and a supportive family or community. I made this comparison and couldn’t let it go.

When I started to get better, I began my trawl through the internet to research everything I could about TB. I am glad I waited until I had started to recover because I was and still am devastated at the reality of what our world is facing. I felt so helpless and at this point the survivor’s guilt started to creep in. I started questioning what right I had to survive and receive the care that millions do not? However, the fact is, I did survive and have decided to put this challenging experience towards helping others because every person with TB should have the right to treatment without stigma and discrimination. This is not only important to those suffering, but global eradication of TB will also benefit us all.

In March 2018, I moved to the other side of the world and am now living in London. The years after I had TB and before moving to the UK, I had developed symptoms of Post-Traumatic Stress Disorder (PTSD). I have always had varying levels of anxiety and experienced bouts of panic attacks but these were different. They were crippling and held me back from living my life fully. I put it down to triggers and not dealing with the mental side of going through such a horrible, isolating disease. I knew I needed to break the cycle that I was stuck in, so I trusted my gut and made the leap. After about a month of living here I had this burning desire to put my experience with TB to good use, but I honestly didn’t know where to start. I started writing letters and finally had the courage to start sending emails to anyone involved with TB research or advocacy, eventually connecting with the Stop TB Partnership and then RESULTS UK. With the contacts I have now made and will continue to make, it is a goal of mine to do whatever I can to raise awareness and fight for eradication of this disease.

With the recent United Nations High Level Meeting on Tuberculosis that took place in New York in September 2018, there has been a major step in the right direction. This meeting was implemented to help “accelerate efforts in ending TB and reach all affected people with prevention and care.” Its ambition was to create a bigger response to TB and gain more much needed support from world leaders. However, from some reports, attendance was less than expected and representatives from many countries with high TB burdens were missing all together. It was stated in another press release that, “Heads of State and Government attending this first-ever UN High-level meeting on TB agreed to mobilize US $ 13 billion a year by 2022 to implement TB prevention and care, and US$ 2 billion for research.” If the goal for eradication by 2030 is to be met, further commitment needs to be made from all countries and promises needs to be put into action.

I am ready to take up the fight, and hopefully bring others along with me, to do what I can to help with the eradication of a disease that has impacted too many lives, communities and countries.

Hannah McLean-Knight

Campaigns Coordinator

Hannah works as a Campaigns Coordinator at RESULTS UK supporting our network of grassroots volunteers. She is the first point of contact for any new volunteers and enjoys meeting our grassroots campaigners around the country to encourage them to take action against global poverty. Following a...

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