Reality Of A Person Living With Multiple Chronic Diseases

It was a rather gloomy day when I had a chance to meet Lakhuna Das*. I was documenting stories and journeys of persons with drug-resistant Tuberculosis (DR-TB). Lakhuna Das’s journey caught my attention. Mukesh Yadav, my colleague at Innovators in Health had already briefed me about his health condition. He also requested me not to ask any questions up-front but rather allow him to speak and then enquire more.

I had prepared to interact with him, meet his family, maybe even play with his children. But I was not prepared to hear what unfolded in front of me during the interaction. Mukesh and I entered a veranda and met Lakhuna’s wife who immediately recognized us and went inside to call him. In the meantime, I had a chance to look around. There was one bed, sitting in front of which were three children eating rice out of the same bowl. The youngest one had a bruise on his neck. I was going to take a closer look at the bruise just when Lakhuna came from behind me. He said, “उसको यह घाव तीन महीने से हो रखा हैं। जिसको भी दिखाओ, उनके पास कोई जवाब नहीं होता है”. (He has had this wound for three months now. Whoever we go to, have no clue on what exactly it is)

Also read: Is It Possible To Eliminate Tuberculosis By 2025?

Without waiting for my reaction or response, Lakhuna immediately turned to Mukesh, my colleague. He began telling him how the medicines make him feel. After addressing his concerns, Mukesh introduced me to Lakhuna and briefed him about the purpose of our visit.

Surviving In A Big City

Lakhuna has a family of five that includes his wife and three children. He used to work as a mechanic and live in Delhi with his family. When I told him that I am from Delhi, he said, “बहुत मुश्किल शहर है” (It is a very difficult city). He went on to add, “अगर आपके पास पैसे हैं तो आप खुश रह सकते हो. वर्ना दिन-रात मेहनत करने की आदत डाल लो”. (Only if you have money, you can be happy. Otherwise you have to learn to work hard day and night).

Lakhuna’s wife delivered their youngest child in Delhi’s Safdarjung Hospital where she was detected as HIV positive. Following that, the doctor also tested Lakhuna HIV positive. Both of them had started HIV-AIDS treatment. A couple of months post-delivery, the child caught severe pneumonia and was admitted in a hospital for 10 days. Once the child recovered, Lakhuna’s father fell sick and also needed to be admitted there.

As a result of all this, Lakhuna spent nearly 20 days in the hospital. ”अस्पताल में इलाज बहुत बढ़िया हो रहा था मैडम. लेकिन पैसे इतने कम थे की आस-पास रहने की कोई व्यवस्था मैं नहीं करवा पाया, इसलिए अस्पताल के ज़मीन पर बीस दिन काट लिए।”. (The treatment in the hospital was going well, madam. But I had less money. I could not make any arrangements to stay nearby the hospital. So I spent twenty days there on the floor).

Dealing With The Illness All Alone

Once everyone was okay, Lakhuna decided to send his family back to the village. This would mean a better support system for them. He stayed back in Delhi. It was evident in his narration that sharing all this was difficult for him. I told him that he can share only what he is comfortable with. He responded, ”आप यह कहानी इसलिए ले रहे है ना की और लोग इन दिक़्क़तों से ना गुज़रे. और आप लोगो की बेहतर मदद कर पाए. हम आपको सब विस्तार से बताएंगे. कितना भी मुश्किल क्यों न हो.” (You are writing this story so that other people don’t go through these problems, right? And you can help them better. So, I will tell you everything in detail, no matter how difficult it may be).

Once the symptoms started getting worse, he visited a hospital where he was diagnosed with Tuberculosis. The doctors started his medicine course. After a couple of days, when he started to feel better, he stopped taking medicines. The reason was shortage of money. Lakhuna’s condition started deteriorating again.

Three months later, when it became difficult to manage all by himself, he decided to move back home. However, by the time he could save enough money to travel, the first wave of Covid-19 pandemic had hit. Due to immediate lockdown, Lakhuna couldn’t move out of Delhi. I asked him if he was aware that TB medicines are free of cost in government hospitals. To that, he said, ‘‘अब मालूम हैं, लेकिन उस वक्त नहीं पता था.” (Now I know, but I was unaware at that time).

”दिल्ली में वह महीने बहुत-बहुत मुश्किल थे। काम मिल नहीं रहा था, तबियत दिन-प्रतिदिन बिगड़ रही थी और किसी तरह रोज़ खाने की कोशिश लगी रहती थी।”
(Those months in Delhi were extremely difficult. I was not getting work, health was deteriorating day by day. I was somehow trying to feed myself everyday).

Coming Back Home In Bihar

It was only after the second lockdown when trains started from Delhi and Lakhuna was able to come back home. By this time, his condition was extremely serious. He visited the primary health center (PHC) in his block where upon looking at his reports, he was again put on TB medication. Mukesh met him here since he works closely with people suffering from TB. He supports them with home-based screening, navigating the diagnosis process and being their advisor as well as confidant throughout the treatment.

With Mukesh’s help, Lakhuna went in for further medical examination and got diagnosed with drug-resistant TB. After all these challenges from the diagnosis in Delhi, Lakhuna was finally started on the correct medicines only a year later, in December 2020.

I asked Lakhuna how it is being back at home. My assumption was that it would be a lot easier to deal with everything here. On hearing my question, he teared up and went inside the room. His wife responded, saying, ”जबसे हम HIV पॉजिटिव हैं, लोग हमसे बात करने से कतराते हैं. लेकिन क्योंकि लखुना काम करता था तो हमारा घर चल रहा था. जबसे TB हुआ है, लोग बात करने को भी राज़ी नहीं है. मदद मांगते हैं तो सब साफ़ मना कर देते हैं.” (Ever since we are HIV positive, people shy away from talking to us. Because Lakhuna used to work, we were able to make ends meet. But since he has contracted TB, people are not even ready to talk. When we ask for help, everyone flatly refuses).

Lakhuna came back and highlighted how his home does not have its own bore well. Because of his disease, the neighbors have forbidden them to use the community well. As and when Lakhuna feels a little better, he tries to get temporary work of painting walls in the vicinity. However, the paint fumes bother him and he cannot continue for long. He is the only earning member in his family. Lakhuna’s wife added, ”कभी-कभी जब इनकी तबियत बहुत ख़राब होती है और घर पर खाने के पैसे नहीं होते, मैं गाँव-ग़ाव लोगो से पैसे मांगती हूँ. थोड़ा बहुत गुज़ारा हो जाता हैं।” (Sometimes when his health is really bad and there is no money for food, I go from one village to another, asking people for money).

On our way back, Mukesh highlighted how due to the ongoing DR-TB and HIV treatment, Lakhuna is experiencing a severe adverse event (SAE), affecting his mental health. The drugs were stopped initially during a doctor’s consultation, which resulted in the improvement of the symptoms. However, on initiating them again, the psychosis episode relapsed.

Whether his mental health concerns are due to the medicines or his day-to-day struggles or both is for us to understand, analyze and further support with. However, it is extremely important to take a proper look at Lakhuna’s journey to understand the alienation a patient and his family have to go through. He is just one individual representing the journey of many suffering from a combination of TB, HIV, and mental health illnesses.

*Name changed and face hidden to maintain sensitivity and confidentiality.