Black and white photo of Olya KlymenkoIn 2016, Olya Klymenko released her biographical novel ‘Peace inside me: confessions of a girl with TB, a biographical novel’, which describes her experience with TB and the bitter stigma associated with this disease. Today Olya is the chair of the organisation TB People Ukraine and a Board Member for TBEC. You can order the book directly from the author by email at Olyaklymenko2910@gmail.com, by Viber +380676850140 or by Messenger https://www.facebook.com/messages/t/Olga.Klimenko29. Olya donates the proceeds from sales to support TB treatment and families in difficulty. Any one person is capable of doing a good deed.

This is not a real review. It is instead a response to a book that left its impression in my heart.

The book fascinated me from the first pages with its sincere and straightforward story about the author’s difficult childhood and adolescence. When Olya was a young child, her mother became seriously ill and soon died, leaving Olya with many painful memories. Her relationship with her father was fraught and she grew up too fast, having to survive against the background of poverty and social insecurity so familiar to any post-Soviet reader. From the age of 14, she worked, left home, became homeless, lived in the street, developed a career in restaurants, studied, made friendships, fell in love. A kaleidoscope of bonds, disappointments, pain, new bonds and partings. Through the text, I can clearly see the theme of gratitude to people who later betrayed Olga, the willingness to help close ones at all costs. These are qualities, so clearly manifested in today’s Olga’s character as an activist. But where today she is a well-established professional, back then she could barely survive.

The main narrative arc reflects the ruthlessly accelerating pace of life. Love, her daughter’s birth, separation, work, a desperate battle for a municipal apartment, debts, career, new debts. “Problems were snowballing out of control, and life was gaining serious tempo” – writes Olya. She became co-owner of a restaurant, working round the clock in the hope of repaying her debts and giving her business some stability. Olga’s story is a deep and painful confession. But where does TB come in? – I was asking myself impatiently, having already read three-quarters of the book in one short evening sitting in an airport.

With a small daughter on her hands, Olga decided to adopt a second child. Life continued to gain momentum, turning into a tragic waltz of a brave young businesswoman, a lonely tired young mother, not even able to stop and have a rest. As she confesses, she protected herself with a mask of arrogance. As you read, you are painfully aware that she will inevitably break down. Then, when Olga was preparing her documents for adoption, she went to take the required medical examinations. Suddenly an x-ray showed a black spot in her lung. A week later – a confirmed diagnosis – tuberculosis. And shock.

As she sat in the doctor’s office, Olga thought: “For me, as for most people, TB is something related to disadvantaged people, it has to do with old posters on hospital walls. That was everything I knew about it and I felt very dirty. For some reason, I was very ashamed in front of the doctor as if I were sitting completely naked”. Olga was terrified that she might infect her loved ones – fortunately, her colleagues and her daughter stayed healthy, but Olga had to ditch her adoption plans.

Olga was immediately sent to a TB hospital. Nobody informed her about the right to choose how she could be treated, whether she had an option of an outpatient treatment or ambulatory care. In the course of the next months she was stigmatized in the TB hospital and discovered a quickly thinning circle of friends…

While Olya was waiting for confirmation of her diagnosis of drug sensitivity, she shared a hospital room with three more patients. As she discovered later, two of Olga’s neighbours in the room had a drug-resistant form of TB, while Olga had a sensitive one. She was lucky not to get re-infected from her neighbors with a drug-resistant form of TB, but how many people in our region are at risk of cross-infection in the hospital…

If Olya had known about her right to access ambulatory treatment, she would not have exposed herself to additional risks, she would not have suffered the isolation from society, separation from her family.

Tomorrow my girl will be sent to the clinic “for contact people”, – Olga writes about the daughter. They did not see each other for several months while Olga was stuck in the TB hospital and Olya had to bid her daughter goodbye. “I will make my princess a bath with foam, as she loves, and I will stroke her long hair for the last time”.

As Olga learned later her daughter could have stayed with her… But doctors did not give her the information she needed to make an informed choice.

Can you imagine, you went into the hospital when your child was one year old, but when you left your child was already going to kindergarten. It’s scary …”

I tried to imagine it myself and cold sweat appeared on my forehead.

Olga was yanked away from the chaos of her usual life, but her troubles continued even in the hospital. “It seemed that it was the bottom, it simply could not be worse than that. And then one morning called me and just said that I had nothing else: no restaurant, no business, nothing at all … only debts.”

On the fifth month of treatment, she began to develop skin pigmentation as a side effect of treatment. “Well, you just live and don’t want to look in the mirror, your body is disgusting” – it was a damaging blow to Olga’s beauty and her self-confidence. Depression came but luckily it paired with the help and support of close friends. Fortunately, Olga recovered and she made it back to the big world after a long exile.

Olga began looking for a job and asked her TB doctor for help. She needed a document stating she was no longer infectious. Instead of helping Olga, her doctor called her “a TB girl” and claimed that now she would not get a job for a long time.

Sometimes one episode from a patient’s experience is more illustrative than any number of official reports. For me, this is one of those times.

Fortunately, Olga not only recovered and found a good job, today she unites a community of people affected by TB in Ukraine, giving them confidence in their right to health and human dignity. She is changing the system.  “I do not want to change the world, I would like people to change,” Olga writes in the last chapter. “Let good things happen!”

It is through cases like this that our professional mantra about the people-centred approach in TB care gains a clearer dimension and expands far beyond TB. Olga not only defeated the disease, but she has taken on a far bigger challenge.  But this is the only way to defeat TB – pills are definitely not enough.

Review written by Daniel Kashnitsky


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