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“India Needs To Talk About Mental Health And COVID-19, HIV And TB”

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BY Deepti Chavan and Debshree Lokhande

Fear and paranoia have gripped the world today because of COVID-19 — a highly infectious disease. There is uncertainty, stigma and resulting mental health stress for those at risk or affected. People forget, however, that before this, there have been other infectious diseases such as SARS, HIV and the ancient TB.

These infectious diseases have only ever been talked about in hushed tones. Even more hushed are whispers about mental health issues. But when it comes to talking about infectious disease and mental health together — all that exists is silence.

As we fight COVID-19, what can we learn from TB and HIV and their impact on patients’ mental health? As survivors of drug-resistant TB, having battled the disease for years, we have experienced the impact of infectious disease on mental health.

Dealing with a TB diagnosis is mentally exhausting. A drug-resistant TB diagnosis is even more traumatising. As news reports indicate, a diagnosis of COVID-19 is no different — people panic, and some even flee because of the fear of being in quarantine.

TB treatment is long — nine months for drug-sensitive TB and two years for DR TB; and involves taking multiple medicines, and in some cases, even painful injections. It comes with a host of mental health side effects such as psychological distress, anxiety, depression and psychosis that affect a patient’s quality of life.

TB, COVID-19 and HIV come with a host of mental health issues

For COVID-19 patients, from the moment of diagnosis, the absence of a cure, the fear, stigma and the guilt of infecting others has an enormous mental health impact. In both cases, patients feel depressed, frustrated and anxious about recovery.

In TB, certain TB medicines like Cycloserine directly impact mental health. It causes extreme mood swings, depression and anxiety. In extreme cases, it can cause mental breakdowns and worsen pre-existing mental health conditions. In COVID-19, the stigma and fear play a similar role. Patients can become paranoid, irritable and sometimes even aggressive.

Chest physician Dr Prabhu and staff nurse Mala examine and evaluate a patient who defaulted on his anti-tuberculosis treatment (ATT) and is now a MDR (multi-drug resistant) TB suspect.
TB treatment is long — nine months for drug-sensitive TB and two years for DR TB; and involves taking multiple medicines, and in some cases, even painful injections.

Moreover, in COVID-19 and in pulmonary TB, patients are forced to isolate due to the highly infectious nature of these diseases. These patients struggle with loneliness and despair. In both cases, depression and/or anxiety are obvious outcomes. Simple tasks like eating or taking a shower seem impossible. Not surprisingly, patients find it difficult to speak about their challenges, access health services or even take their medicines. In extreme cases, many patients report feeling suicidal.

Even after cure, there is the obvious stigma and lack of self-esteem. In the case of COVID-19, affected individuals don’t know how to disclose their status. It is the same in TB and HIV. The residual stigma from TB and the continuing stigma in HIV cause patients to lose their self-confidence, and it causes self-blame. They withdraw from people and social situations, and this isolation often leads to depression.

Yet, alongside exists a promising reality — COVID-19 is not always dangerous, TB is curable and HIV is almost a chronic disease. So mental health challenges, if addressed, can be transitory. Stories from TB and HIV are proof of this.

These are stories of hope. One of our fellow drug-resistant TB survivors now spends his vacations mountain climbing. Another TB survivor, a copywriter, found solace in writing. Yet another TB survivor rediscovered a new career as an educator. People living with HIV also have gone on to live perfectly normal lives, speaking about it without fear. Each of them faced mental health challenges during treatment but overcame them.

We need to incorporate a mental health component in our COVID-19 response to help patients cope.

First, we need to sensitise medical professionals and health workers about mental health and COVID-19, TB or HIV and train them in basic counselling. Second, screen COVID-19 patients for mental health issues at the time of diagnosis and intermittently during treatment.

Also, counsel patients and families through diagnosis and treatment to sensitise them about the impact these diseases have on mental health. It also includes equipping them with self-care strategies and with ways to cope. Families need to be encouraged to support patients by giving them positive stories of hope and recovery from other diseases as well.

Also, acknowledge that there is no shame in having mental health issues and seeking help. Not only can these survivors turn their lives around, but they can also help others.

Finally, we need to create a public narrative on mental health and destigmatize it by stressing that mental health is important for everybody. Nobody is immune to mental health issues or infectious diseases. This is a time of crisis, and mental stress is a given. A cure for COVID 19 may come when it comes, but empathy and consolation are our most important medicines right now.

India needs to talk about mental health and COVID-19, HIV and TB in its homes, offices, schools, and colleges. Mental health and these diseases need to become the subject of mainstream conversations. There has never been a better time to do this.

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An ambassador and trained facilitator under Eco Femme (a social enterprise working towards menstrual health in south India), Sanjina is also an active member of the MHM Collective- India and Menstrual Health Alliance- India. She has conducted Menstrual Health sessions in multiple government schools adopted by Rotary District 3240 as part of their WinS project in rural Bengal. She has also delivered training of trainers on SRHR, gender, sexuality and Menstruation for Tomorrow’s Foundation, Vikramshila Education Resource Society, Nirdhan trust and Micro Finance, Tollygunj Women In Need, Paint It Red in Kolkata.

Now as an MH Fellow with YKA, she’s expanding her impressive scope of work further by launching a campaign to facilitate the process of ensuring better menstrual health and SRH services for women residing in correctional homes in West Bengal. The campaign will entail an independent study to take stalk of the present conditions of MHM in correctional homes across the state and use its findings to build public support and political will to take the necessary action.

Saurabh has been associated with YKA as a user and has consistently been writing on the issue MHM and its intersectionality with other issues in the society. Now as an MHM Fellow with YKA, he’s launched the Right to Period campaign, which aims to ensure proper execution of MHM guidelines in Delhi’s schools.

The long-term aim of the campaign is to develop an open culture where menstruation is not treated as a taboo. The campaign also seeks to hold the schools accountable for their responsibilities as an important component in the implementation of MHM policies by making adequate sanitation infrastructure and knowledge of MHM available in school premises.

Read more about his campaign.

Harshita is a psychologist and works to support people with mental health issues, particularly adolescents who are survivors of violence. Associated with the Azadi Foundation in UP, Harshita became an MHM Fellow with YKA, with the aim of promoting better menstrual health.

Her campaign #MeriMarzi aims to promote menstrual health and wellness, hygiene and facilities for female sex workers in UP. She says, “Knowledge about natural body processes is a very basic human right. And for individuals whose occupation is providing sexual services, it becomes even more important.”

Meri Marzi aims to ensure sensitised, non-discriminatory health workers for the needs of female sex workers in the Suraksha Clinics under the UPSACS (Uttar Pradesh State AIDS Control Society) program by creating more dialogues and garnering public support for the cause of sex workers’ menstrual rights. The campaign will also ensure interventions with sex workers to clear misconceptions around overall hygiene management to ensure that results flow both ways.

Read more about her campaign.

MH Fellow Sabna comes with significant experience working with a range of development issues. A co-founder of Project Sakhi Saheli, which aims to combat period poverty and break menstrual taboos, Sabna has, in the past, worked on the issue of menstruation in urban slums of Delhi with women and adolescent girls. She and her team also released MenstraBook, with menstrastories and organised Menstra Tlk in the Delhi School of Social Work to create more conversations on menstruation.

With YKA MHM Fellow Vineet, Sabna launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society. As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Read more about her campaign. 

A student from Delhi School of Social work, Vineet is a part of Project Sakhi Saheli, an initiative by the students of Delhi school of Social Work to create awareness on Menstrual Health and combat Period Poverty. Along with MHM Action Fellow Sabna, Vineet launched Menstratalk, a campaign that aims to put an end to period poverty and smash menstrual taboos in society.

As a start, the campaign aims to begin conversations on menstrual health with five hundred adolescents and youth in Delhi through offline platforms, and through this community mobilise support to create Period Friendly Institutions out of educational institutes in the city.

Find out more about the campaign here.

A native of Bhagalpur district – Bihar, Shalini Jha believes in equal rights for all genders and wants to work for a gender-equal and just society. In the past she’s had a year-long association as a community leader with Haiyya: Organise for Action’s Health Over Stigma campaign. She’s pursuing a Master’s in Literature with Ambedkar University, Delhi and as an MHM Fellow with YKA, recently launched ‘Project अल्हड़ (Alharh)’.

She says, “Bihar is ranked the lowest in India’s SDG Index 2019 for India. Hygienic and comfortable menstruation is a basic human right and sustainable development cannot be ensured if menstruators are deprived of their basic rights.” Project अल्हड़ (Alharh) aims to create a robust sensitised community in Bhagalpur to collectively spread awareness, break the taboo, debunk myths and initiate fearless conversations around menstruation. The campaign aims to reach at least 6000 adolescent girls from government and private schools in Baghalpur district in 2020.

Read more about the campaign here.

A psychologist and co-founder of a mental health NGO called Customize Cognition, Ritika forayed into the space of menstrual health and hygiene, sexual and reproductive healthcare and rights and gender equality as an MHM Fellow with YKA. She says, “The experience of working on MHM/SRHR and gender equality has been an enriching and eye-opening experience. I have learned what’s beneath the surface of the issue, be it awareness, lack of resources or disregard for trans men, who also menstruate.”

The Transmen-ses campaign aims to tackle the issue of silence and disregard for trans men’s menstruation needs, by mobilising gender sensitive health professionals and gender neutral restrooms in Lucknow.

Read more about the campaign here.

A Computer Science engineer by education, Nitisha started her career in the corporate sector, before realising she wanted to work in the development and social justice space. Since then, she has worked with Teach For India and Care India and is from the founding batch of Indian School of Development Management (ISDM), a one of its kind organisation creating leaders for the development sector through its experiential learning post graduate program.

As a Youth Ki Awaaz Menstrual Health Fellow, Nitisha has started Let’s Talk Period, a campaign to mobilise young people to switch to sustainable period products. She says, “80 lakh women in Delhi use non-biodegradable sanitary products, generate 3000 tonnes of menstrual waste, that takes 500-800 years to decompose; which in turn contributes to the health issues of all menstruators, increased burden of waste management on the city and harmful living environment for all citizens.

Let’s Talk Period aims to change this by

Find out more about her campaign here.

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A former Assistant Secretary with the Ministry of Women and Child Development in West Bengal for three months, Lakshmi Bhavya has been championing the cause of menstrual hygiene in her district. By associating herself with the Lalana Campaign, a holistic menstrual hygiene awareness campaign which is conducted by the Anahat NGO, Lakshmi has been slowly breaking taboos when it comes to periods and menstrual hygiene.

A Gender Rights Activist working with the tribal and marginalized communities in india, Srilekha is a PhD scholar working on understanding body and sexuality among tribal girls, to fill the gaps in research around indigenous women and their stories. Srilekha has worked extensively at the grassroots level with community based organisations, through several advocacy initiatives around Gender, Mental Health, Menstrual Hygiene and Sexual and Reproductive Health Rights (SRHR) for the indigenous in Jharkhand, over the last 6 years.

Srilekha has also contributed to sustainable livelihood projects and legal aid programs for survivors of sex trafficking. She has been conducting research based programs on maternal health, mental health, gender based violence, sex and sexuality. Her interest lies in conducting workshops for young people on life skills, feminism, gender and sexuality, trauma, resilience and interpersonal relationships.

A Guwahati-based college student pursuing her Masters in Tata Institute of Social Sciences, Bidisha started the #BleedwithDignity campaign on the technology platform Change.org, demanding that the Government of Assam install
biodegradable sanitary pad vending machines in all government schools across the state. Her petition on Change.org has already gathered support from over 90000 people and continues to grow.

Bidisha was selected in Change.org’s flagship program ‘She Creates Change’ having run successful online advocacy
campaigns, which were widely recognised. Through the #BleedwithDignity campaign; she organised and celebrated World Menstrual Hygiene Day, 2019 in Guwahati, Assam by hosting a wall mural by collaborating with local organisations. The initiative was widely covered by national and local media, and the mural was later inaugurated by the event’s chief guest Commissioner of Guwahati Municipal Corporation (GMC) Debeswar Malakar, IAS.

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