Diagnosis: stigma and loneliness
MSF’s psychosocial team in Belarus works to help patients with tuberculosis (TB) overcome various challenges on their way to recovery. One of their tasks is to keep the patients company and to let them vent their fears and concerns or simply speak about whatever is important to them.
Human relationships are an important factor in people’s health. For some patients, loneliness is a far greater challenge than the physical effects of the disease. Treatment for TB can be lengthy, and patients may spend years in treatment facilities, gradually falling out of touch with their friends and relatives outside. Some see their families turn away from them out of fear of the disease. Separated from those close to them, many patients find solace in memories of their loved ones and in companionship with other patients. In TB wards, it is clear that people who have been deprived of company really understand the value of friendship.
Although being diagnosed with TB dramatically disrupts normal life, most patients refuse to let it define their lives. They dream, they joke, they make plans. In the words of one of our patients, “We’ll get through this, whatever it takes.”
Dmitry 48, is being treated for drug-resistant tuberculosis in the Republican TB Institute in the Belarusian capital, Minsk. The TB drugs that he took previously caused one of his kidneys to collapse, so he will have to spend a long time in the hospital.
"How long have you been here?"
"This time? Seven months."
“My doctor was cross with me because I had a drink. But how could I not? I hadn’t seen my daughter for eight years and she came to visit!” Dmitry has three children living in Italy – they were adopted by an Italian family after his parental rights were taken away. “I haven’t seen my son since 2005. My children love me. I’m in touch with them, they write to me.”
“My sister is in another hospital, in Volkovichi. She used to be as here, but she was transferred. She had her whole lung cut out. This is the third time she has had TB.”
Dmitry’s counsellor says that when he was first admitted to this hospital, he was tough and prickly, but since then he has relaxed. “He couldn’t bear to hear nice things said about him – he wasn’t used to warmth.”
Dmitry attends regular sessions with MSF counsellor Andrey.
Dmitry attends regular sessions with MSF counsellor Andrey.
Leonid, 53, is from Minsk. He spends his days and nights alone in a locked room in the intensive care unit of the city’s Republican TB Institute. He has been on TB treatment since 2003. He suffers from nightmares, so the doctors are concerned about his mental condition and think he may be dangerous to other patients. Leonid is convinced that his nightmares are caused by loneliness.
"I was working, I wasn't taking any treatment, and here I am. Work always came first for me."
Leonid has a daughter and grandchildren, but has not seen them since he got sick in 2003. His sister and niece live nearby in Minsk but he does not see them either. All of his family are afraid of catching TB from him. Leonid has little to entertain himself with in his room, as all his belongings have been left in one of the wards.
While waiting to be moved to another hospital, Leonid passes the time reading and listening to the radio. When the batteries in his radio run down, the silence makes him feel gloomy. Still, despite the loneliness and the boredom, he is constantly cracking jokes and is determined to keep his spirits up: “You have to laugh sometimes if you don’t want to get stuck.”
"I wish someone would visit me, but everyone is afraid of this disease."
"Let me tell you about my dreams. Sometimes when I lie here alone, I have this dream – I’ve had it several times – a huge pit. At night. There are many tubs in that pit, huge tubs, and people suspended on hooks. Blood is dripping into the tubs. It’s a big pit. Half-people, half-beasts are walking around the people, cutting them, torturing them. No one touches me, I am walking around them. I wake up in cold sweat. Hell’s bells, everyone has dreams about what’s happened over the day, what are these bloody delusions about? So I’m told I need to be locked up. They say I’m dangerous for the public."
“Living with TB is very bad. You might as well be dead – no one needs you. There’s nothing worse than loneliness. No one wants to visit me, I’m alone here. And no one is allowed here. Anyway, who would want to come? Patients like me? They have their own problems. Here, it’s every man for himself. You’re a man – your survival is your own business.”
Oleg, 46, comes from Ukraine. As a foreigner, he was ineligible for free TB treatment from the state with the new drugs that he needed, and he could not afford to buy them. Oleg is now completing his treatment in Minsk, with the help of MSF. He lives in Minsk with his wife, Larissa, who works as a nurse in the outpatient clinic. The couple met when he came to the clinic for his medication.
Several months after he first started TB treatment, Oleg still felt no better. He could barely tolerate the drugs and he was losing weight. After each medical board meeting, he hoped to hear news about a change to his treatment regimen, but it did not happen. His condition deteriorated and he could no longer work for more than two hours at a stretch. But he had to work as he needed the money to pay for the treatment.
“When someone wanted to shake my hand, I wouldn’t let them. Any slight pressure would make me feel like my bones were about to break. Every day at the same time I felt withdrawal pains, like a drug addict. Every smell would make me nauseous.”
Oleg was eventually prescribed new drugs, including delamanid, which he got for free under MSF’s programme. Within a month of starting the new treatment, he was feeling better. He regained his appetite and started gaining weight. But not everything was rosy. He experienced depression, which was not new to him, but it had never been this severe before.
“When I was depressed, nobody could help me, but thanks to MSF I received help. Dmitry, the MSF counsellor, came to see me. He’d listen to me and comfort me. I was referred to a specialist who prescribed drugs for my depression. All of this made me feel better. Dmitry and other MSF staff visited and called me all the time. We would talk and joke together and I felt better. All of this support really helped.”
“My friends would phone me, but they live in Russia, and the ones who live here turned their backs on me right away. I had powerful friends. I used to help them without expecting anything in return. But when I asked for their help, they rejected me as soon as they heard about my diagnosis. My closest friends are my mother and my wife.”
Yulia, 39, is an inpatient in the Republican TB Institute in Minsk. She has TB, HIV and hepatitis C co-infections. Yulia is coping with drug addiction and is currently on methadone replacement therapy.
When she was 18, Yulia fell into bad company and started using drugs. She tried to quit a number of times, but with no success. Finally she ended up in prison as a result of her drug habit. After two years in prison, she was clean again, and when she was released she decided to have a child.
“I have a boy now of 13. When he was a year old, I got meningitis. The lower part of my body was paralysed. That was when my husband left me – he thought I’d be in a wheelchair for the rest of my life. That’s when I went off the rails again. I had bad pains in my legs and I used drugs to numb the pain.”
“When I wake up in the morning, I don’t want to live. Then I get up, the pain slowly subsides, and little by little I want to live again.”
“When I found out I had TB, my legs gave way. I never expected to get it. The treatment is tough; I have to take so many pills. I was surprised by the attitude I see here: the paramedics and nurses are very friendly, and the doctors too. There are many antisocial types here, alcoholics. The staff take great care of them, coddle them, just to get them cured, just so they don’t leave or run away.”
“As for HIV, I’ve been expecting it all my life – all my addict’s life. I wasn’t even surprised. I knew where I was going with the drugs. I don’t like to talk about it, because people here don’t have the right mindset yet – they shun people like me.”
“My family are used to everything with me. They weren’t horrified. They supported me when I found out I had HIV; they are supporting me through this. My son was tested, and he’s fine. We’ll get through this, whatever it takes.”
Yulia and her roommate Lida throw breadcrumbs out of the window to feed the pigeons, who they treat as pets.
“Sometimes the ledge is full of pigeons,” says Lida.
“Those pterodactyls,” says Yulia, opening a tube of glue. She is mending a pair of shoes for another patient, a girl who has no visitors. Lida likes to talk about her daughter, who lives in Minsk, and about the time when she was young.
“My daughter got a baby without getting married. Men, they all drink, but it’s good to have a baby. I used to be in the movies, as an extra in war movies and TV series. Then I retired and became a model in an art school. I had to sit for a long time in difficult poses. Artists would make my hair look however they wanted. The portraits were so beautiful!”
VADIM & ALYONA
Vadim, 29, and Alyona, 19, met when they were receiving TB treatment in Minsk. They live together now in a rented apartment and continue their treatment as outpatients. They go to the dispensary together every day to take their medications.
“We are still on treatment and we have to take odd jobs, we can’t choose jobs that we like,” says Vadim, “so I’m constantly looking for a job. But a year ago we were both in hospital, and now we live together, and we have a better standard of living than our parents. You should never give up. We don’t have much, but we don’t impose limits on ourselves. We go to the movies, we buy food that we like. When we go to the dispensary in the morning, we buy two ice-creams – it’s our tradition.”
Alyona’s parents had TB. Her mother got cured, but her father died. He was drinking and neglecting his treatment. When he finally made up his mind to get cured, there were no drugs that could help him.
“When I heard about my diagnosis, I didn’t cry – I had no reaction at all. I didn’t understand it, I just felt hollow inside.”
“I knew I could get infected, but I didn't care – I didn’t want to stay away from my mum for six months,” says Alyona. “It was hard and unpleasant in the hospital at first, but then some nice people were admitted there. I could have fun with them, go for a walk, and it became easier for me.”
Vadim is from Baranovichi, where he began his TB treatment. He was diagnosed with TB and diabetes at the same time.
“Someone told me it was a gift that I got ill. God lets you look at yourself from the outside. As I look back at some moments, I understand that it was a lesson for me.”
“In the hospital in my hometown, there were only elderly men in the ward, and they all were drinking. I felt like I was in a hospice and was there to die. When I found out I had drug-resistant TB, I thought it was the end. I was told there was a hospital in Minsk where new drugs are tested. I thought: ‘If it’s so hard and scary now, Minsk is going to be torture,’ but I had no choice. It turned out that there were lots of young people in the hospital in Minsk, so life there was completely different – it was like a holiday camp.
In Minsk I started exercising, and the more I did, the better I felt. But everybody was saying: ‘What are you doing? Lie down. You shouldn’t be doing push-ups, you idiot, you have TB – a deadly disease.’ So I went to the sportsground where there was nobody. I wanted to prove I could do it, and I did. And then guys of Alyona’s age started to come to me saying: ‘Vadik, please show us how to exercise.’ That’s how we met.
We feel comfortable together. I can tell her everything. She’s younger than me, but as my friend and partner, she tells me everything in return. We support each other. We’ve worked hard to get to this point. Now, with everything going so smoothly, it’s great, because mutual understanding means so much.”
Belarus is listed as a high-burden country for multidrug-resistant tuberculosis (MDR-TB) by the World Health Organization (WHO). MSF started working in Belarus at the end of 2015, and currently supports the Ministry of Health in the Republican Research and Practical Centre of Pulmonology and Tuberculosis (known as the Republican TB Institute) in the capital, Minsk; in two TB dispensaries in Minsk; in the forced hospitalisation centre in Volkovichi, in the Minsk region; and in the TB hospital in Penal Colony Number 12 in Orsha. MSF provides treatment free-of-charge using the latest-generation TB drugs (bedaquiline and delamanid), as well as psychosocial support for patients to improve their adherence to treatment.
Following a review conducted by MSF in 2016 in Minsk which identified alcohol use disorder as the main risk factor for poor adherence to TB treatment, MSF provides targeted support to patients with alcohol use problems and other marginalised patients.