Lwin Lwin Thant, Myanmar[Lwin Lwin interviewed a person living with HIV, drug-resistant TB and Hepatitis B Virus in Myanmar. She is presenting the story as was told to her below]
“Ma Mya!.. Ma Mya!.. Ma Mya!” I heard my name being called out loud and impatiently from the street while I was busy with housekeeping for my family. Worried, I rushed out of my house and found a nurse from the township medical clinic waiting for me.
She told me to visit the clinic the next day at 9am. Hearing the alarming calls from the nurse, the curious neighbours became inquisitive about the visit and me.
“Sayama (nurse), what disease does she suffer from?" one curious woman unabashedly asked the nurse in front of me, and the nurse replied, “She suffers from TB.”
STIGMA, DISCRIMINATION
From that moment onwards I have suffered discrimination from my neighbourhood through their acts, talks and body language (like wearing faces of disgust, gossiping, keeping distance from me and my family, not letting their children associate with mine).
I have an eighteen year old daughter and a ten year old son from my previous marriage (which ended in a divorce ten years ago) and one daughter from my second marriage. I live with my in laws and I am the sole earning member of my family and work as a domestic help in laundering. It is a hand to mouth existence and my working daily is essential to keep the kitchen fire burning. I had so many problems in life that became careless about my treatment and did not take my TB medicines regularly. After six months the TB bacteria in my body became drug resistant. I was also diagnosed to be HIV positive and had Hepatitis B virus (HBV) too. All this really scared and worried me as to how my kids will live if I cannot work. As the grudge of my present parents- in- law over accommodating my family intensified, I had to move with my kids to a suburb, away from my usual customers, renting a 10 square feet room at 20,000 kyats ($20) per month.
On the day of my appointment day at the clinic, I went there with a heavy heart thinking about rent, kids, work, HIV and TB. While waiting at the clinic, I heard a public clinic nurse refusing to give treatment to me. She said, “I do not want to give treatment to this patient even if I have to leave my job for this”.
I felt sad. My whole life had collapsed and had become meaningless. What had I done apart from working to bring up my kids? Had I chosen to get this TB? Had I became so disgustful to the people around me that even the healthcare staff was avoiding me? Will I be able to get regular treatment or medication without discrimination? These were some of the questions that rose in my thoughts. At this point, I even thought of leaving the clinic immediately but then I thought of my kids. I had to be healthy to take care of my children. I remained seated there and waited till another nurse agreed to treat me under the supervision of the PICTS (Programme to Increase Catchment of Tuberculosis Suspects) which has been launched by The International Union Against Tuberculosis and Lung Disease (The Union). I have also been put on Antiretroviral therapy (ART) treatment under The Union's IHC (Integrated HIV Care for Tuberculosis Patients Living with HIV/AIDS) Programme.
I think that the PICTS and IHC Programmes of The Union are a big boon for the poorest of the poor like me.
TWO DAUGHTERS GET THE TB DISEASE
I was really heart broken when I learnt that my two daughters also had contracted TB from me.
I felt bad, sad and depressed about the situation which life had presented to me. But I kept strength for my children. It has been over two months since my two daughters are on the anti-tuberculosis treatment and I wish they get cured quickly and enjoy their lives as other kids do without prejudice and discrimination. I also wish myself to recover from TB, so that I can work and look after my children, although I will have to live with HIV forever."
[Lwin Lwin interviewed a person living with HIV, drug-resistant TB and Hepatitis B Virus in Myanmar. She presented the story as was told to her above]
Lwin Lwin Thant, Myanmar
November 2013
