“I used to be scared of telling others that I had tuberculosis. I myself had a hard time believing this,” says 25-year-old Mira as she puts down her book. “But now, I’m not scared of the fact that I had TB. I’m not scared of being judged by the society, by the people around me. People need to understand that anyone can fall sick, and that patients need support, that support saves lives.”

Mira now seems on top of the world. She hasn’t always had such a massive smile on her face; in fact, she’s been on a long road. In November 2016, when she was still studying at university, she unexpectedly learned her diagnosis: tuberculosis (TB).

“I didn’t understand what was happening at first. It seemed like life was playing a cruel joke on me.”

“A stab in the back”

In fact, Mira didn’t even feel that sick when she was diagnosed. “I had been on a strict diet because of gastritis, so I had lost weight. I guess that’s why I fell sick, I completely weakened my immune system,” she says, as she takes another bite of the cheesecake in front of her, now enjoying every flavor of life.

Mira started treatment for drug-sensitive tuberculosis, but three months later, she was grief-stricken with a new diagnosis: extensively drug-resistant tuberculosis (XDR-TB), a very severe form of the disease that takes two years to treat. Until recently, only one in ten patients was able to beat XDR-TB.

And on top of that, she was told she would have to put her studies on hold and cancel the internship abroad which she had dreamed of for months. Mira was sent to the TB hospital in Kara-Balta to start her new treatment. “I had never been in the hospital before for a long treatment. And now, I didn’t even know how long I would have to spend there.”

“It felt like a stab in the back, I can’t even put words on it,” she stammers, trying to hold back tears. “All of the goals that I had set for myself collapsed like a house of cards.  I can usually control my emotions, but at the time, I was just furious at fate. I was at the same time in a state of shock, and angry at the whole world.”

21 pills a day

Mira had to take 21 pills a day and had so many intramuscular injections that she still feels the bruises. Mira’s world suddenly turned upside down, and she lived in complete despair, as if all the lights had turned off. “I was like the main hero in the film Outcast. I crossed out every single day that passed in the hospital on my calendar. I didn’t want to speak to anyone, to see anyone, even the other patients who had TB just like me. I didn’t want to do anything. And I didn’t want to eat, I just felt nauseous all the time.”

Somehow, though, Mira got over her depression, and she started eating. “My body told me to eat, and I did. I felt so much better afterwards, and I understood I had to go on. And guys from the hospital that I didn’t even know gave me a gift on March 8. I was so pleased that I finally opened up and started talking to other patients, to nurses, and learning about TB.” Visits from her friends and relatives gave her the strength to take the pills, day after day.

One step at a time

In May 2017, Mira was one of the first patients in the country to receive a new treatment scheme and new drugs (Bedaquiline) for XDR-TB, and she finally started feeling better. She got back on her two feet and set small goals for each day. Except for Sundays, when she didn’t have to take her treatment. “I can’t even explain just how much I was looking forward to those Sundays.”

After six months in hospital, she was released on ambulatory treatment. It was hard at first since she had to take the bus to the hospital every single day in the scorching summer heat in order to take her pills in front of a nurse. But she was then switched to video observed treatment, which “solved many problems”.

In November 2018, Mira completed her treatment and was entirely cured.

“It was a triumph, like a second birthday.”

“It’s time to end stigma”

Tuberculosis taught Mira how to love life, and how to love herself. She tries to learn something new every day and is always very attentive to her health. Since, she’s perfected her English, learned graphic and motion design, oratory and journalistic skills, and finished her bachelor’s degree. She’s always taking up something new, never leaves home without a book and tries to smile at life – no matter how hard it sometimes get. Most importantly, she’s become a TB activist, and she wants to dedicate her life to helping those who are going through what she has once endured.  

“Tuberculosis entirely changed my life. New principles, values and goals replaced the old ones. Before, I had always wanted to work on T.V. But now, I want to do humanitarian work. I understood that I can help others, and that my voice counts.” Mira is especially concerned about stigma and discrimination.

“It’s time to end stigma. Because of it, patients stop treatment and die.”

Mira faced stigma from a few health care workers, who rudely made her step aside, even though she was not contagious, and declared that only the homeless can get TB, which is, of course, far from the truth. “I felt like I wasn’t even a human being. It was so offending, and it just made me angrier, when all I needed was a bit of care.”

She began helping other patients when she herself was still on treatment, and hasn’t stopped since. No matter how hard it was for her, TB has now become Mira’s strength.

“I thought about this interview and about sharing my story for a long time. But then, I came to the decision that such stories need to be told, because we already have a problem with stigma and discrimination. Like one of my wise friends said, unfortunately, it’s hard to fight stigma and it will take years. But if we are scared and don’t talk about TB, then nothing will change and the society will continue to live with this problem,” says Mira.

“No matter how hard it was for me in those difficult times, my parents, relatives and loved ones always showed care and support. I want to thank all of those who helped me, who knew that I was sick. I’m so grateful to my parents, who “beat” this disease every single day with me; to my siblings and cousins who didn’t fail me. I’m very thankful to the doctors and nurses who treated me in Jalal-Abad, Kara-Balta and Bishkek. And I am infinitely grateful to the international projects and all of their employees for introducing new drugs, thanks to which many patients, including me, were cured. Thank you!” 

Kyrgyzstan is one of 30 countries with a high burden of drug-resistant tuberculosis. Joint efforts of the national program, international organizations and NGOs have led to significant achievements in the past years, including much higher success rates for XDR-TB treatment, and saved many lives. UNDP has been working together with the Global Fund to fight AIDS, Tuberculosis and Malaria since 2011 to encourage early diagnosis, improve laboratory services, train health care workers, purchase anti-tuberculosis drugs, introduce patient-centered treatment methods, eradicate stigma and support every patient on treatment.