By Ayushi Khemka
Contemporary discussions on mental health in India have been focusing heavily on the need for self-care over the past few years, especially on social media. Taking care of yourself seems to have become one of the modern age commandments if you wish to tread the path of a good life. Brands and influencers are encashing on this latest buzzword of social media and often advertising products that could help one indulge in some self-care.
The very idea of self-care in a society that is founded on systemic lack of care can be a tricky one, given the structures of patriarchy, Islamophobia, casteism and so on. More often than not, in our conversations on self-care, we tend to bypass the need to care for the caregiver. A caregiver is simply someone who takes care of the one battling a mental health condition. They can be your family, friends, partner, or even professional caregivers. In India and many other low and middle income countries, the onus of caregiving often falls on the shoulders of the families.
Given the familial structure in our (contemporary Indian) society, the family setup does tend to become the primary caregiving body to the one battling. However, it is also important to note here that the family itself can be a trigger and one of the debilitating factors of one’s mental health. The power dynamic of the institution of an Indian family and the social stigma around mental health can often come together to create a space that is not particularly supportive for a person battling mental health issues. In such a scenario, it is imperative that we look at the association of caregiving, mental health and families from a critical lens.
No matter who the caregiver is, our conversations on mental health do not actively engage with them, and even when they do, they can tend to be quite tokenistic in nature. Mona Sharma Rana, founder of Manorathi Foundation and a mental health service user as well as family member of a person with mental illness, mentioned that while caregivers are adequately represented on paper, the actual reality is not quite the same.
Speaking about the Mental Health Care Act 2017, she told The Health Collective, “The Mental Healthcare Act mandates representation of service users and caregivers in all district, state and central level committees. However most of these committees haven’t formed yet.”
Something else you might have noticed is that it is fairly common to see a plethora of mental health events being organised with zero representation of a person with mental illness (PwMI) and a caregiver. Having said that, it is imperative that one moves beyond the basic need to include the voices of persons with lived experience and caregivers. Sharma argues, “It’s not just about including the voices of families and service users. We need to amplify these voices. Only together can we amplify our voice in such a way that engagement of service users or families is seen not just as a compulsory activity to be fulfilled to form a committee or group but such an engagement is sought for its purpose and success of the program.”
In addition to the legal and formal aspects of representation and importance of caring for the caregivers and their perspectives, one ought to look at the everyday ways in which caregivers play a pivotal role in mental health advocacy and awareness framework. A mental health issue can take a toll on an individual, rendering them in a position where they need some form of support from a loved one. As there are no set norms and duties that a caregiver must follow, their role moulds according to the needs and wants of the person battling with a mental health issue.
A caregiver might provide emotional support by making the other person feel heard and seen and also engage in more hands-on activities by helping with the everyday chores such as cooking, laundry, grocery shopping, and the like. However, caring for a fellow adult could be a bit tricky.
“The biggest challenge (faced by a caregiver) is figuring out a balance between caring for someone who is struggling and feeling like you are responsible for everything they do, feel and think,” says Adishi Gupta, co-founder of Mental Health Talks India and a service user, speaking from her own experiences with her caregivers.
Without adequate support and setting of boundaries, a caregiver could run the risk of a burnout. One certainly cannot pour from an empty cup. Dr. Achal Bhagat told The Health Collective in an earlier interview, “Sometimes it’s very important that you are able to go and debrief with somebody else about what you’re experiencing so caring is also about looking after yourself, if you do not look after yourself you are bound to get angry or impatient with the person you are caring for.”
Furthermore, caregiving is more complex than it seems. Not only is one required to maintain personal boundaries while providing the necessary support, the fact that mental health still does come with attached stigma does not make anything any easier. Questioning the very basis of the stigma and the shame surrounding mental health is extremely important.
Speaking about the awkwardness that comes with caregiving and often prevents people from engaging in these conversations, Gupta says we need to “have spaces that address the complexity and messiness of it (caregiving).” Incorporating a discussion on the socio-cultural aspects that affect mental health in the larger public discourse around it is the need of the hour. Gupta suggests that self-care for caregivers is often difficult due to “the lack of financial, medical and social support for persons living with mental health conditions and their caregivers, such that the caregiver has to individually shoulder the responsibility of making up for a failing and inefficient system.”
Another challenge facing the caregiver and service user movement in India is “the advocacy lobby itself as most of the family and service user lobbies in India work in isolation and are dominated by the urban, middle or upper middle class,” Sharma argued. The road to caregiving is certainly complex but with adequate social and structural support, it can be fairly less bumpy, if not completely smooth.
Having said that, there are a few things that caregivers could keep in mind to make the entire process of caregiving a whole lot manageable. Psychologist Kamna Chhibber has suggested right here on The Health Collective that a caregiver could “take active measures to do a check in and set a frequency at which they would check in with their loved ones”. She goes on to recommend caregivers help their loved ones who are struggling in figuring out support structures in and around their community.
As the world is grappling with a global pandemic and one can often not be in close contact with the loved ones, encouraging them to determine their support systems close to where they are can be beneficial for both the caregiver and those struggling. Lastly and most importantly, a caregiver ought to take care of their own selves. You cannot pour from an empty cup!
About the Author:A 27-year old Delhiite, Ayushi Khemka created Mental Health Talks India in April 2018. Living with depression and anxiety herself, she wishes to end the stigma around mental health in India. She believes in channelising one’s vulnerabilities into an honest conversation that can potentially bring about a change in how we live and exist in the world.
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