Voices from the ground: Stories of people affected by tuberculosis

Hara Mihalea, CNS Correspondent, Thailand 
42 years old Khun Mouk (name changed) comes from a small village of Chiang Rai in North Thailand and does odd construction jobs for a living. When I met him he looked very ill. His wife said that he had been like this for some time now--not eating and losing weight, coughing, feeling very hot, and feeling very tired. Initially he took several herbal medicines to get better. But when they did not relieve his symptoms he went to a pharmacy as well as two private clinics for help. He was given different kinds of cough syrups, antipyretic medicines for the fever and mucolytic tablets to release his cough.

All this while, despite being so ill, he continued to work being the sole earning member in his family.  As time passed, his condition worsened. Three months ago he started coughing blood and he could no longer work. Money became scarce and there were days when the family could manage just one meal which often came from the temple.

Finally his wife convinced him to go the government hospital where he had his sputum tested and was diagnosed with TB. In her words, “He felt very scared, lonely, unwanted, and unworthy. He wanted to go away from everyone to hide as he was afraid that he would pass on the disease to me and to our children and was scared of what people might think of him and our family once they knew he has TB.”

She complained that, “He is taking his anti-TB drugs irregularly because of their side effects; he smokes and drinks very often and he still eats very little. He goes to the hospital once a month to take his medicines but he doesn’t tell the health staff that often he doesn’t take them.”

When I asked him the reason for this he said that, “The health staff is not welcoming and always in a hurry to tell me what to do and what not to do, making me feel as if it is my fault that I am ill.”

Two weeks ago Khun Mouk and his wife went back to their village. I tried to contact them but his earlier phone number was no longer valid. Perhaps Khun Mouk will be one more person lost to follow-up and will not complete his treatment.

Photo Credit: Hara Mihalea
Aunt Moung Mon is 76 years old and lives in Pongro Village Takeo province in Cambodia. I met her during my visit to the district hospital. She said, “I have been sick for a long time and did not know what was wrong with me. My entire body ached and I could not eat, sleep or breathe properly. When I tried to speak my chest ached and then I would cough.”

Her son took her to the private clinic and the doctor gave her a bag full of medicines. “They told us that these were symptoms of old age and we should not expect too much”, her son told me.

“My mother got very depressed and the medicines she was given did not improve her condition. We used to think that, unlike public health centres, private doctors had good knowledge and gave good medicines. But despite spending a lot of money, she did not get any better.  Then one day a health volunteer from the nearby health centre came to the village and she provided information on TB. She encouraged my mother to go to the health centre for a sputum test. My mother was very afraid to go. She knew that the health staff was very strict and not always very kind but the volunteer assured her that she would stay with her and that she would be alright. The sputum tested positive and she was diagnosed with TB.”

Mon was shattered-- “I could not believe I had TB. TB is contagious and poor people have TB. I was worried about what the people in my village would say about me and my family. Taking anti-TB medicines was really thorny. I could not keep them down and every day I wanted to give up. If it wasn’t for the support of the health volunteer who came every day to see me and gave me my pills, and the support of my family, friends and neighbours I would have given up but with their support I did not and now I am cured and I am very happy.”

A few months later when a neighbour of aunt Mon showed similar symptoms it was she who encouraged her to go to the health centre where she too was found to have TB and is now on treatment.

59 year old PaJan lives with her daughters and grandchildren in Thailand. She works as a street cleaner and sometimes does light domestic work. When I met her she was coughing and said she could not eat properly, was losing weight very fast and felt very tired all the time. However everyday she came to sweep the streets because she needed the money. Finally her symptoms got worse and she went to the local clinic where she was given antibiotics (amoxicillin), cough syrup, and antipyretics. When I saw her 2 months later she had lost significant weight and had a difficult time breathing. She could no longer work. She said that she knew she had a bad disease and was too afraid to go to the government hospital even though she would not have to pay much there. I was very concerned not only for her health but also for the health of her 3 small grandchildren who she took care of most of the time. In a culture like ours, where children are always been held and often sleep with a grandparent or another caregiver especially for families where many people live in cramped spaces, disease transmission is inevitable.

Sadly it was not until the youngest of the grandchildren fell very sick that her daughters were able to convince her to go to the government hospital. She was diagnosed with TB and started treatment. Two months later the younger grandchild was also diagnosed with TB and is also on treatment.  When I asked her why she waited so long to go to the hospital, she said that, “Deep down in my heart I knew I had TB. I heard before that if someone coughs and blood comes out it is TB. It is bad to have TB-- people keep away from you, they talk about your family, they do not let you work, and then how will we live? The children need to eat.”

But now she is determined to finish her treatment even though the pills make her feel really bad and there are many side effects. She said the health staff told her that she must eat well at least 3 times a day. But for PaJan having a good, nutritious meal is a luxury and she also needs to make sure that the youngest grandchild gets fully cured.

During one of my visits to the district hospital in Ulaanbaatar I met a 16 year old girl who had been diagnosed with MDR –TB a few months ago and was on treatment. She told that she had had a very difficult time dealing with her disease, not only because the treatment is so long and painful but also because of the stigma and isolation her disease has brought on her and her family.  She gave credit to the health staff who were taking care of her treatment but said that as they were always very busy with patients they had very little time to explain things to her and listen to her worries and concerns. She said that, “I am a teenager with a serious disease that I know very little about. I need to have someone to talk to about my deep concerns someone to support me through this. Right now, besides dealing with my disease, I have psychological needs that are as important to be dealt with if I am to get cured. My friends are no longer my friends, they are afraid of me. I need someone to help me get through this bad phase and plan my future.”

Her father who accompanied her to the hospital said that he did not know how to help his daughter to deal with the psychological side of her disease.

The stories of these four individuals and their families have a number of things in common and are representative of thousands of other people affected by TB around the world. All of them were afraid of the stigma when people found out that they had TB; they were afraid that they and their families would be isolated and discriminated against; and they would lose their jobs. They were afraid to seek treatment in the public sector because they felt they would not be treated with kindness by the health staff. So they delayed seeking appropriate care for their symptoms and continued to work due to economic reasons despite being very ill. And yet they spent significant amount of money self-medicating and seeking care at private sector. In all these four cases eating well balanced meals to help bear the side effects of the medicines and to help them gain strength was a big issue for the poor families. One important thing that needs to be promoted is the community and family support that these individuals needed to get them through the treatment’s intensive phase and to help them complete the treatment.

When I asked them and their families what would have made their fight against TB easier, they highlighted four needs--  (1) health providers’ attitudes towards patients matters a lot and the long wait before  getting confirmed diagnosis prolongs the suffering;  (2) compassion, support, and encouragement from family, friends, health providers and community helps in completing treatment and getting cured; (3) nutritional support is important to deal with the side effects of medicines; and (4) dissemination of correct information about the disease is really important.

These are legitimate requests and I wonder why after so many years of spending millions of dollars and so many interventions, families and communities affected by TB are still facing the same challenges. But maybe there is still a ray of hope. One of the requirements of The New Funding Model of the Global Fund to Fight TB, AIDS and Malaria is to engage affected communities in country dialogues and get their inputs. People and communities affected by TB will be able to represent their constituencies in country coordinating committees, bringing to the table their concerns and needs and ensuring that these are addressed. However there are concerns of how successful this will be. As one of community members feared that ‘despite all the good intentions and promises, at the end we will get nothing because there is always something more important than us to be addressed and taken care of’.

It saddened me to hear this because I am an optimist and I want to believe that someday TB will finally become a disease of the past. I can think of a number of interventions based on fairness and equality like community strengthening and increased community engagement; collaboration and partnerships among all sectors and at all levels; a holistic approach towards addressing all medical and social determinants associated with TB.

Let us, during this World TB Day, try to make a sincere commitment, and follow it up too, to help eradicate this disease from the face of the earth.

Hara Mihalea, Citizen News Service - CNS
March 2014
(The author is a global TB activist and international public health and TB consultant based in Chonburi, Thailand)

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