As the world grapples with the covid-19 pandemic, the anxiety, fear, and restrictions it poses have once again brought mental health to the forefront. As health systems struggle to cope with the fallout of this infectious disease, there is no better time to remember the mental health needs of those suffering from an older and larger pandemic—tuberculosis (TB).
TB and mental health are deeply related, though often ignored. The global community, and in particular high-burden countries such as India, aren’t talking or strategizing enough about them. Although it is mentioned in passing, we rarely acknowledge, understand, or address these twin epidemics that feed each other.
On World Mental Health Day, it’s important to remember that a large percentage of TB patients have mental health problems, from the point of diagnosis until after they have recovered. What do these challenges look like? Depression, anxiety disorder, and low self-esteem are some examples. In the long-term, they often erode the individuals ability to function optimally and live productive lives.
We treat TB only as a medical challenge when it’s not. Stigma, gender, sexuality, class, caste—all of these interplay here. TB associated stigma, can lead to self-stigma and social-stigma, isolation, abandonment, and abuse. In some cases, screening for mental health problems does not even figure on the to do list for healthcare providers.
So what are the needs and experiences that we can identify as former TB patients, and now survivors and advocates? TB is highly stigmatised, so even a diagnosis can cause mental health issues. The health system neither understands nor addresses this problem in any way. People with mental health problems are at an increased risk of exposure to TB infection due to homelessness, smoking, poor nutrition, and co-morbidities such as HIV.
Additionally, TB treatment is long and mentally exhausting with numerous side effects. Several anti-TB medicines like cycloserine, which is used for drug resistant TB, cause mental health problems such as anxiety, or psychosis. When the health system does not address these issues, patients’ ability to continue treatment reduces, they isolate, lose self-confidence and some even harm themselves.
A fact that the system often forgets is that unless we address mental health issues, the patient’s experience of care is adverse and their ability and desire to continue care is extremely poor. For instance, depressed patients are three times more likely to stop or give up on treatment due to side effects. They are also less likely to delay seeking treatment. The result is drug resistance, increased transmission, and poor treatment outcomes.
Where can we see solutions? A start would be to see a disease like TB or for that matter, every disease, holistically and integrate its social and mental health support aspects as an essential part of treatment. Implement a stigma mitigation strategy in communities and for affected individuals and families. Build skills among the health force, to reduce stigma and provide better quality care—including mental health screening and support. It’s time we look beyond clinical approaches and focus on a more holistic approach to fighting and surviving TB, focused on more than just treatment outcomes.
Another important aspect is to institute mechanisms for peer support—in the form of virtual networks, where patients can be connected to other patients and survivors. A critical role here is also of community awareness, destigmatization of TB and mental health at the community level, and patient literacy. Expecting patients to eat toxic medicines for months or years without support is insensitive and inhuman. Those affected by TB need to understand it and know the physical and mental challenges that will arise while fighting it. These programs help improve patients’ experiences of care and patient’s quality of life and mental health.
Key elements of this approach would be to provide mental health support from the time the patient is diagnosed with TB, until after they have recovered. The final element would be psychological rehabilitation after cure to help the patient deal with residual depression, as well as self stigma and long-term self-confidence issues.
It’s time to stop thinking of TB as just a medical ailment. It is inextricably linked to the mental health of the individual, and the families and communities it affects. If we don’t address it, as we have tried to with the current pandemic, we will exacerbating these co-epidemics in times covid-19.
Debshree Lokhande, Architect, XXDR TB Survivor and Fellow, Survivors Against TB
Diptendu Bhattacharya, Educationist, MDR TB Survivor and Fellow, Survivors Against TB
Competing interests: None declared.