Question 1: Shubhrata Prakash, I picked up the book, “The D-WORD: A SURVIVOR’s GUIDE TO DEPRESSION” recently at Delhi International Airport, where it was prominently displayed in the best sellers rack. Tell me in brief about the journey of making of the book.
Answer: It was a book which just needed to be written. Ever since I had been diagnosed with Major Depressive Disorder, or MDD, I had been looking for ways to help myself. I was trying to understand what had happened to me and what could I do to set it right, other than just depending upon the insufficient armamenarium of psychopharmacology. Finding the elusive causative factors for my malady had turned an existential battle for me as I was not responding well to medication, not even to the third-fourth line of medication. Anyone familiar with the terms ‘poly-pharmacy’ (use of multiple psychotropic agents simultaneously) and the ‘band-aid approach’ (where psychotropic medicines often work like lottery) to psychotropic medication would know what I was going through. During this process, I came across a very rich body of research happening in the field of neurosciences,, psychiatry, genetics and clinical psychology and and sadly here I was, surrounded by people who had no clue about what MDD is. And even those who knew were unable to find a lasting solution to my existential trauma.
When became clear to me that what I suffered from was refractory depression, i.e. treatment-resistant depression (medication just does not bring any succor to more than two third patients suffering from MDD), it became all the more imperative that I find my own mooring and create my own path-ways to help myself. Unlike popping a paracetamol when I had fever, there was no pill I could pop which could boost my mood. It simply did not work. So, I dug more into what was available on the internet and other sources, including other people’s first-person’s accounts of MDD, and then I thought, why not share it with other people like me who are suffering? Who knows what may help?
Question 2: How did the idea for the book germinate. Did you not fear even for a minute that baring your story of long suffering with Depression might result in social stigma and can impact your and your family’s life here in after
Answer: Writing ‘The D Word’ was a part of therapy for me. I have always enjoyed writing and I write a blog at “talktalkmein.blogspot.in”. My family, friends and my therapist had been encouraging me to take up writing on a larger scale. When the publishers of the book, Pan Macmillan, asked me what I wanted to write about, ‘The D Word’ came to me automatically.
I wanted to write a book on MDD for four reasons. One, all the knowledge that I had gained through research for myself would benefit others who were suffering like me. Two, writing was therapeutic – in fact, in places it was self-counselling. Three, I had faced so many harsh and caustic comments from people, from society, who had no clue what MDD was. I was tired of explaining my condition to people, who still did not get it. The level of awareness about depression and other mental disorders is abysmal in Indian society. Four, I wanted to share my own story as a beacon of hope: I wanted to tell others like me that it is Ok not to be Ok, that; I too am like you and I am surviving everything that you too survive everyday – so. Let’s just keep it that way – surviving everyday.
As far as the stigma is concerned, well, I wouldn’t say that I wasn’t worried. Not for myself, but for my children. They have to grow up with the legacy of the book that I have written. I second guessed myself many times. But each time, I concluded, that if I feel no stigma, there is no stigma. I have a brain disorder, like other people have heart, lung, liver, kidney disorders. Does anyone ever feel ashamed of any of that? Does any diabetic having impaired blood glucose feel any stigma? Why should I?
Question 3: Let us step back and talk about you- Shubhrata, the person. Your child hood, education and career. And intersperse all these with your decade long fight with depression
Answer: I was born and brought up in a small town called Patna, and received the best of education possible there. I graduated in Mathematics (honors) from St. Stephen’s College, Delhi. Then I did an MBA from Xavier Institute of Management, Bhubaneswar. I worked briefly in advertising with Lintas and Leo Burnett. I gave up my high-paying job for a career to serve in Civil Services of the country. I cleared the UPSC exam (which is also known as I.A.S exam) in 2002 with rank of 66, and joined Indian Revenue Service, where I am an Additional Commissioner of Income Tax.
I have had a long and winding career, and since my MDD happened quite late in life, I did not face any disability in getting there. One landmark event of my life which I’d like to mention here is that just two months before my UPSC interview, I was diagnosed with a congenital heart defect, for which I had to undergo surgery. And I walked into my interview just two weeks after my surgery. You can imagine my amusement when people tell me to “Be brave!” when I tell them about my MDD – if that is not brave, what is, pray?!
However, after developing MDD, and as the illness got worse over the years, things have changed. On a good day, I am as charged up as always; but on a bad day, I do need to retreat and ride out the trough. I work in a department where deadlines are statutory and enforceable in a court of law, and I have even administered the RTI Act in one of my charges; so I do work around my disability, and I have always managed to beat the time curve. I must thank my seniors and my staff for the full support they have extended to me, which has helped me to continue working despite the challenges. At present, by a fortuitous turn of events, my husband is posted at the Indian Embassy, Bangkok, and that has given me time off work. I have a lot of space for myself and for recovery here, and I am making the full use of it.
Question 4: You know Indian society has indescribable stigma about mental illness. When did you first realize that you suffered from depression and how long it took for you to accept the truth and who has been your support network
Answer: I was one of those people who believed all the myths about depression. In fact, due to ignorance, I had missed the diagnosis of post-partum depression altogether. When I was formally diagnosed with MDD the first time, it was a shock. I totally believed that I had depression, since I was the one who had approached the psychiatrist, but it was shocking because I lived in the same society that thinks depression is for sad, melancholy people who cannot handle life! And here I was, a happy, strong person, an achiever all through, and I had depression? That is when I started reading up about my condition, and the knowledge I thus gained was a life saver. It helped me understand what MDD is, and that made acceptance a lot easier.
My basic support network always has been my husband, my psychotherapist and a couple of friends. My family took a while to understand the whole situation, and thereafter, my parents and sisters have been there for me too. My children are taking up that role fast as they are beginning to understand what is depression, as they are growing up. Besides, at different points of time, different people have pitched in and supported me.
Question 5: To alleviate your suffering have you taken medication or do you take the same as and when required.
Answer: I was on medication for a long time – 3 to 4 years. I started off by being on an SSRI, and then an SNRI, and finally, a mood stabilizer. I also had supplementary medication in the form of anti-psychotics, stimulants, sedatives, and anti-anxiolytics. They all worked for some time, and then they stopped working. Around a year back, I started reacting so badly to some of the medication, that I had to taper off all medication – partially on medical advice, partially because I became non-compliant. (This is not medical advice. Please do not start or stop any psychiatric medication without your doctor’s advice.)
It was a long period of anti-depressant-withdrawal-hell. However, I survived. Once the medication started going out of my system, I began feeling better. The longer the time between stopping medication and the present, the better I was. Now, one year down the line, my MDD is in remission. It doesn’t quite go away, but one or two bad days in a month is normal, even for non-depressed people. The only medication I take now is vitamin B-complex, and that monthly clonazepam (anti-anxiety) if need be. What I am regular with, though, are swimming, running, yoga, and mindfulness meditation.
Question 6: I find a growing (though small) group of young Indians suffering from severe mental illnesses like recurring MDD, Bipolar Disorder and Schizophrenia who claim that they can solve their illness on their own without medication. What is your suggestion to them.
Answer: Well, I have dealt with the issue of psychiatric medication quite in detail in my book. People with severe mental illness who have been prescribed medication need to consider a lot of factors. All such factors have to be split into two categories.
One is the illogical, irrational social stigma category where patients (I use the term patients because we are discussing illnesses from a medical view point) are advised by their care-givers or family not to take medication. Medication is addictive, has harmful side-effects, depression-is-just-sadness that you can overcome, you-are-not-so-weak-that-you-need-medication – blah-blah-blah, yada-yada. Well, to all such people, patients and care-givers, I would just say, depression itself comes with a fatal side-effect: suicide.
The other is, of course, the rational debate about medication. I found a lot of discussion on its merits and demerits, mostly on depression support groups on the internet, and in first person accounts. Medication does not work for a large percentage of people. Poly pharmacy often has to be resorted to, which then leads to the ‘band-aid’ effect. Sometimes, adverse effects are so severe that normal life becomes worse than it would be without medication – something which I found in my case.
So, I would say, listen to logic. Sit down with your doctor and work out the pros and cons. Unfortunately, in my experience, doctors often discount the life-disabling adverse effects. Read up as much as you can. Arm yourself with knowledge. And then make an informed decision with all stake-holders together – patient, care-giver and doctor.
Question 7: National Mental Health Survey , 2016, puts the incidence of Indians suffering from one or other mental illness at 10% and WHO says by 2020 one in 4 Indians will suffer from Mental Illness. What according to you is the way forward.
Answer: I am aware of the statistics and they seem to be quite alarming. Alarming, because, there is so little known about the human brain and what are the exact causes of the different categories of mental illnesses, despite the vast research in neurosciences, even as we discuss this issue here.
For the cause of MDD, promising research has found bio-genetic markers of depression, and some patients have shown the high incidence of CRP, an inflammation marker, in their blood. Some physiological interventions like rTMS (repeated Trans-cranial Magnetic Stimulation) and Vagus Nerve Stimulation have shown promise. However, we are still quite far from a perfect solution to curbing MDD. There is still no ‘silver bullet’ to slay the beast. At best, we can hope for a day when research will throw up customized drugs for treating patients, and even curing them.
Till then, what we could do, is keep oneself informed on the latest that is available in terms of treatment or management of the condition. If the patient is no shape to do so himself or herself, the care-givers could take up that responsibility, along with everything else they are already doing. Most of all, we hold on to hope!
And, last but definitely not the least, keep society educated and informed. Fight the stigma.
Question 8: Hope in the hopeless world of Mental Illness is the central message coming out of your book. Tell me, what has motivated you on this Aekala Chalo path to de-stigmatize Mental Illness in India
Answer: I am not the first, and I am not the last! You are one of the pioneers on this path, and you have inspired so many people to open up about their mental disorders. Hats off to you for doing that!
In my case, the reason is a little more selfish. Honestly, I was tired of beating my head against the wall trying to explain to people what MDD is. I was tired of telling them that depression is NOT sadness; it was nothing to do with weakness of character. But my strength was getting ebbed in explaining to people one by one. I started writing on my blog, but my blog has limited reach. It was only a book of this scale that could help get my message across to a large number of people. I want people to read this book and understand what MDD is – a brain disorder, which can be caused by anything – hormonal changes, vitamin deficiency, excess cortisol secretion due to extreme psychological stress, or exposure to allergen or toxin. I want them to know that depression is not sadness, or madness, or weakness of character. And most importantly, it can happen to anyone – happy or sad, weak or strong, rich or poor, achiever or loser. MDD has psychological AND physical symptoms. It is not caused by some scandalous secret causing someone to breakdown (eye-roll!) Low moods and crying are what MDD bring, just like high temperature is what fever brings. Asking a person with MDD to stop crying is just like asking someone with diarrhea to stop going to the loo. And someone with MDD does not need your sympathy or your uninformed advice – they have a team of professionals taking care of them.
Question 9: It is said that “Care givers Curse” is often as bad as and at times worse than that of sufferers of the Mental illness. What has been impact if any on your family on the illness. And what support has kept you going
Answer: The impact of mental illness on the family is tremendous. My family has been through almost the same hell that I’ve been through, if not worse. My small children have probably never seen me as I was before I was stricken with MDD. I have tried to explain my illness many times to them, but they are small kids. I still remember this conversation a couple of months back when my 10-year-old asked me, “Mummy can someone die of depression?”. Thankfully, I was able to reassure him, and it was time to visit neurons, synapses and happy-and-sad areas in the brain. My elderly parents have felt the impact of my illness brutally.
The worst affected, of course, has been my husband. Apart from having to see me in this condition, with the helplessness of not knowing how to alleviate my suffering, he has also had to bear the burden of care-giving for me, taking care of small kids and the household, and still doing a very tough job. He has stood rock solid in this whole crisis, and I wouldn’t still be here if it were not for him.
Question 10. What is your central message to the reader of D-Word. And what is your target audience. Tell me why your book is important for general public of India
Answer: My book is aimed at two different sections of the population: one, depression sufferers and their caregivers/family; two, the society at large.
To the depression sufferers and their families, I want to say – do not give up hope. Read more about your condition and the options available before you, like I have put down in this book. Look at me – I went through what you are going through, and I survived. If I can, so can you.
To the society in general, I want to say – please educate yourself about mental illnesses like MDD. Do not let your ignorance make the mentally ill suffer more than what they are already suffering. After all, the mentally ill have the right to live in an educated and knowledgeable society, where they don’t have to waste the energy that they could use in getting better, in fighting the social stigma – just because you are ignorant.