In 2020, the World Health Organisation observed that significant investment would be needed to avert the mental health crisis resulting from the Covid-19 pandemic. Meanwhile, unnoticed, in an older epidemic, tuberculosis or TB, which is airborne much like the coronavirus disease, the mental health crisis has been silently unfolding for decades.
Yet, there is little to no recognition of this crisis or any investment in or strategies for dealing with it. Why? Because in the heavily medicalised approach we have to TB in India and globally, diagnosis and treatment are paramount – not side-effects and mental health.
A recent study conducted in Ernakulam found that one-sixth of TB patients suffer from depression, with the prevalence of depression being higher in patients with multi drug resistant TB or MDR TB. To TB survivors, this is hardly surprising because this is their daily lived reality.
Emotional and mental toll
Depression is not the only mental health issue TB patients face. As survivors of multi drug resistant TB, a more dangerous form of TB, we can testify to the fact that TB affects a person, not just physically, but also emotionally and mentally.
A TB diagnosis alone can be traumatic for many patients. Then there is the treatment which can range anywhere from six months to 24 months. It has crippling side effects that include daily nausea, loss of eyesight or hearing, depression, anxiety, and in extreme cases suicidal tendencies or psychotic episodes. The length of TB treatment alone leaves you mentally and emotionally spent.
The stigma that accompanies TB also has an impact on a patient’s mental health. TB patients feel isolated and alienated. This often lead to low self-esteem, hopelessness, and anxiety.
Then there is the financial strain of TB treatment, potential job loss, setbacks to education due to prolonged illness. This adds to a patient’s mental stress. The uncertainty of what a life after TB would look like, plays heavily on a patient’s mind.
In short, TB leaves no aspect of a patient’s life untouched. No wonder, it was befittingly referred to as consumption.
All of this has an adverse impact on a patient’s ability to continue and complete treatment. Left unaddressed, mental health issues could lead to patients abandoning treatment. This not only affects patients’ lives, but could have insidious public health consequences. TB left untreated will spread in the community at a higher rate.
What is the way to address this crisis? For starters, it requires abandoning the medicalised model of caregiving where the patient is a passive recipient of care. What we need is to shift to a co-production model of care where the doctor, patient and the community are equal stakeholders. Under this model there is a joint determination of what interventions would best address the self-identified needs of patients.
It is important to plan how these interventions can be implemented. The patient’s lived experience and needs guide the care provided. In India, where public health resources and health personnel are both in short supply, engaging affected communities as partners would also help override the resource limitation barrier.
Guided by this framework of co-produced care, the national programme needs to integrate mental health services in TB care at the primary healthcare level. This should include basic, periodic mental health screening by doctors/health workers throughout the treatment to ascertain if the patient is facing any mental health issues and if a referral to a mental health specialist is warranted. It would also help engaging the community to provide peer based support where the mental health issue does not require expert intervention, but requires some basic mental health first aid nonetheless.
We also need to remember that even the best of interventions are useless unless they are accessible to patients. Investing in remote mental health interventions for TB care is critical, so that patients have somewhere to turn to even in situations like lockdowns that make it difficult to access health services.
A precursor to this integration would be to do more research like the Ernakulam study to build a solid body of evidence about the impact TB has on mental health.
This would require political will and resources to both understand this problem, and subsequently design interventions to address it.
Knowledge produced from the research needs to be made accessible to communities so as to improve public awareness on the issue of TB and mental health. This could be done through TB survivor-led multilingual campaigns, at the national and regional levels. Stories of the mental health challenges these survivors faced and how they coped will, not just improve awareness, but also act to possibly mitigate the silent stigma that surrounds this issue.
We cannot eliminate TB from India successfully unless we recognise and address the scourge of mental health problems that come with TB. We need all hands on deck, and we need them now.
Ashna Ashesh is a lawyer and public health professional, and Keyuri Bhanushali is a copywriter. Both are MDR-TB survivors and Fellows associated with Survivors Against TB - a collective of survivors, advocates and experts working on TB and related comorbidities.
October 10 is World Mental Health Day.