I Lost Two Years Of My Life To TB. When Will The World Start Taking This Disease Seriously?
It all started with a pain in my right lung. And probably like a lot of busy, otherwise healthy people, I initially brushed it off. I kept going to the gym, logging long hours at work, and hoped it would go away on its own. But six months later — after countless tests, worsening pain, and finally a lung biopsy — I was diagnosed with tuberculosis.
TB is one of those seemingly far away diseases you hear about in passing, or maybe occasionally on the news. I knew absolutely nothing about it. The idea that it would affect me, a 32-year-old financial consultant living in New York City, was hardly conceivable. But how bad could it be, really? I was just relieved to know what was wrong with me. I would go through treatment and get on with my life. Then I started coughing up blood, along with bits of lung tissue. The night sweats worsened and I was rapidly losing weight.
Luckily, I was able to quickly begin treatment at New York City’s health department. While I started to feel better, it still hurt to breathe. Something just felt off to me. I didn’t know then that TB exists in different strains, some of them dangerously drug resistant. I would soon learn I had one of them, known as multidrug-resistant (MDR) TB. I had to start treatment all over again, not knowing if it would even work. Every day I swallowed 8 or 9 pills. I had to give myself an injection several times a week. I remember feeling completely physically and mentally depleted, but at the same time, I knew I was one of the relatively lucky ones: I had access to treatment, and I was young and strong enough to endure it.
For millions of people around the world, that’s not the case. According to data released today by the World Health Organization, there are more cases of TB — and more deaths — than we ever knew. TB has now surpassed AIDS as the world’s leading infectious killer. At the same time, more and more people, mainly in low-income countries, are not being reached by treatment programs. If that’s not bad enough, drug resistant TB is an even worse problem than we knew – almost half a million people with drug-resistant TB last year went without access to treatment. Try living with a disease that may or may not respond to treatment, and may or may not kill you. It’s incredibly scary and bewildering.
Fortunately, I responded well to the new round of medications and slowly began to recover. In May 2015, more than 2 years after my initial symptoms, I was cured of MDR-TB. I’m of course grateful to be alive, but I also feel like I lost two years of my life.
“I remember feeling completely physically and mentally depleted, but at the same time, I knew I was one of the relatively lucky ones.”
It took so long to diagnose me correctly, and the side effects from the different medications were punishing. Besides for exhaustion so extreme that I nearly fell asleep while driving a few times, I developed serious depression and anxiety. I found it difficult to talk to people about what I was going through. Conversations with family members and friends tended to end abruptly, which only pushed me further into isolation. I’m still grappling with the mental and emotional scars.
I’ll never know how I got TB. It’s airborne, and I traveled a lot, so anything is possible. But TB is no longer this abstract problem that only concerns other people and other countries. It’s real — and if it could happen to me, it could can happen to anyone.
It doesn’t have to be this way. We need a response that matches the scale of this problem – and we need our leaders to dedicate the attention and resources required. Unfortunately for the last five years, the White House has actually proposed funding cuts for the global fight against TB. We see a similar pattern around the world, where a massive funding gap means that millions of people don’t have access to lifesaving treatment. I hope we can count on the next administration and Congress to reverse course, putting in the resources it will take to tackle this epidemic.
We have to do something so that drug resistant strains don’t proliferate, becoming even more dangerous and harder to treat. We need to develop tools to diagnose and treat TB faster – and make sure the tools we do have are getting to the people who need them most, regardless of where they live. And we really need to break through the stigma that still surrounds this disease so that people feel they can talk about it openly, and seek help if they need it.
All of this is possible to achieve. We can end TB once and for all. It’s just a matter of world leaders making it a priority. My mission now is to make sure they do.
This post is part of the ‘Fighting Tuberculosis’ series produced by The Huffington Post highlighting the challenges of combatting tuberculosis today. TB is now back in the top ten causes of death globally, and is the world’s leading infectious disease killer.