Patient diary: Fighting twin battles against TB and depression is physically, emotionally consuming

I was diagnosed with tuberculosis in March 2017. I was 24, a lawyer by training and working as a graduate fellow at a university in Bangalore. Due to ineffective treatment my disease progressed and a few months later, in July 2017, I was diagnosed with multidrug-resistant tuberculosis or MDR-TB.

The gruelling treatment for MDR-TB normally carries on for two years. Depression is one of the many insidious side effects associated with MDR-TB treatment. For instance, one drug has been associated with depression and anxiety. Some doctors may not disclose this fact to patients, families have trouble understanding the effect on patients and patients themselves struggle with it everyday.

The psychosocial reality of TB patients in India is largely one of isolation and despair. Yet, there is hardly any conversation on this subject. The stigma attached to both mental illness and TB allows for the creation of this dome of silence and loneliness in which patients are often trapped. People do not ask and the patient does not tell.

When faced with an illness, evolutionary imperative dictates that you fight for your life, but what do you do when one illness consumes your body and the other consumes your will to live? TB is physically and emotionally consuming. Depression, in a way, is also a kind of consumption. It does not cause muscle wastage but it induces existential wastage. It consumes your will to move, speak, eat, laugh, breathe.

Many manifestations of depression

In the months I have spent with depression, I have encountered its various manifestations. Some days it has me lying motionless and soundless. I play dead in the futile hope that it will leave me alone. On other days it starts as a slow drizzle of fear – precipitations of past traumas – that gives way to a deluge of terror when I realise that I am a prisoner in my own mind. On some days depression manifests itself as lack of feeling and on other days it is a leaden feeling of loss. Depression is a wonderful anaesthetic but a lousy painkiller.

In conversations about depression, specifically in association with chronic physical illness, it is often written off as a minor fallout of the physical illness. Depression and mental exhaustion are written off as easily manageable concerns. Patients are asked to be positive, optimistic, hopeful even though the drugs are bringing them down. While cultivating a hopeful outlook is important for recovery, it is not enough. Not surprisingly, TB patients struggling with depression are more likely to experience difficulty in complying with TB treatment.

I have scars on my body from the injections that were administered as part of my MDR-TB treatment. I have no equivalent proof for my existential consumption. Depression’s ingenuity lies in leaving scars in places that nobody can see.

Depression confiscates everything: hope, happy memories, love, reality, and vitality. All that it leaves you with is nothingness.

How do you obliterate nothingness? You cannot – you can only try to fill it up.

Support through the struggle

I am fortunate enough to have a tribe of people – my family, my doctor, my therapist, my friends and colleagues – supporting me through my TB treatment and the depression. I alerted my caregivers to what I was going through so I had a safety net in place. I had conversations with my doctor about the possibility of temporary relief from the drug that is associated with depression. I reached out to survivor-led initiatives such as Survivors Against TB for tactical advice on managing the debilitating side effects of the treatment.

My struggle continues. I have about six months of MDR-TB treatment ahead of me. I was privileged enough to have the means to get help, but what about those who can neither access nor afford help? In the absence of a comprehensive treatment regimen, one that incorporates free counselling as an integral element, TB patients in India are left to their own devices.

There cannot be any one size fits all approach when it comes to dealing with depression or mental illness of any kind. There can also be no substitute for professional help. However, the one thing that resonates universally is that depression thrives on isolation and flourishes in silence. Do not suffer in silence. Do not go it alone.

Disclaimer: This is the writer’s personal experience and not representative of the experiences of all MDR-TB patients. This is not intended as a substitute for medical/therapeutic advice or to undermine existing TB treatments. If you are a TB patient and/or suffer from depression, it is extremely important to get help and comply with your treatment. Any changes in treatment must be undertaken only after consulting with a doctor.