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Submitted by PatientsEngage on 23 August 2018
Image Description: A head shot of Mr. Akhileshwar Sahay with spectacles as he shares his experience of living with Bipolar, Depression and COPD

And QUIT SMOKING. Akhileshwar Sahay, a seasoned industry veteran, has been living with bipolar disorder for the last 2 decades. In this interview, he talks about his troubled journey with multiple chronic illnesses including COPD, Depression, Diabetes and his commitment to removing stigma related to mental illness. 

How did your bipolar disorder start? What were the early symptoms?

Bipolar disorder is not like influenza that it is diagnosed at once. Its roots are biological and I was definitely genetically predisposed to it. But, in hindsight, its early symptoms can be traced to the triggers of serial sexual assault in childhood which threw me in the vortex of chronic depression, suicidal ideation (including two suicide attempts), anxiety, panic attacks and PTSD (post-traumatic stress disorder). Also, since early days, I was not normal. My life was punctuated with either too much or too little of energy. Often when filled with high energy, I acted like Hanuman who could achieve anything and in low stage I found it difficult even to get out of bed.

Mental health disorders are often misdiagnosed. You too had a similar experience.  Could you tell us what happened? 

Though symptoms existed all along, I could manage somehow and chugged along. But it all changed in 1997, when I changed from my cushy government class one officer job (I was hero of Konkan Railway for having raised required money to complete the project) to corporate sector as Vice President - Corporate Finance in Essar Group.  The abrupt change, stressors of absence of job security in corporate sector job and extremely high level of stress, led to two major depressive breakdowns in February and August, 1998. It was around this time that I first met a psychiatrist. I was initially diagnosed with clinical depression which was soon changed to bipolar disorder. And, in 2000 after my major manic attack laced with psychosis, the diagnosis was again changed to paranoid schizophrenia before finally settling back to bipolar disorder.

As I was diagnosed with clinical depression at the beginning, I was given first and second generation antidepressants. But these medicines soon took me to an elliptical orbit of drug induced rebound mania. Then I was given lithium which became my primary mood stabilizer medicine.  I took lithium for two-and-half-years during which life became a living hell with complete cognitive dissonance and total non-conformity to medicines. This was the gravest error of judgment on my part and in 2000 after few months of false sense of wellness, I had major manic attack laced with florid psychosis.
Post that a series of mood stabilizers and antipsychotics were tried with sodium valproate as my primary mood stabilizer. Now I am kept in remission with the combo therapy of sodium valproate and quetiapine. 

Mood disorders can have negative effects on relationships. How were you affected?  

My case is unique. Despite my unruly behavior in manic phases and catatonic silence during prolonged depression my rainbow coalition of family and friends has stood firmly behind me. 

I have never had any need for a psychotherapist as my wife has proved to be the best psychotherapist for me. 

And at work?

Both outbreaks of depression and mania, in my case, have been public events.  Also from day one, I have followed the policy of glasnost about my mental illness with my colleagues, bosses and employers as well as my clients. In hindsight, I could have lost my job due to such a glasnost. But I turned lucky both while working in private sector and public sector, my bosses and employers have acted like angel guardians. The Government of India has humbled me by appointing me as member of key government committees ignoring the harsh truth of my suffering from severe bipolar disorder.

You have talked about your smoking habit and your struggle to quit smoking. Did you eventually succeed? 

Unlike most other people, I did not start smoking as a student. The first puff, taken from a colleague’s cigarette while training as Probationary Officer in State Bank of India at Calcutta in 1982, was nauseating but soon I got addicted. There was a time when I was smoking 60 sticks of Wills Navy Cut in India and an equal number of Marlboro Red when outside the country.

I have made many unsuccessful attempts to quit smoking, but every time it hits back as an obsessive compulsive behavior after few days. My latest attempt was after diagnosis of COPD in November, 2017 – I did not touch it for three months but again resumed it albeit at a much lower level.  In my case smoking has possibly been a co-morbid situation with bipolar disorder.  Interestingly, I take only a few puffs of a cigarette and throw two-third remaining.

When was you diagnosed with COPD?

I was diagnosed with COPD in November 2017.  I was preparing for the exam to become Insolvency Professional and was smoking a lot due to stress. The symptoms were very heavy cough with mucus which was there for nearly a year, but worsened during the period of my exams. When my cough became unbearable, I visited a pulmonary expert in a Mumbai hospital who after pulmonary function tests (PFT) bluntly announced - “Chronic Obstructive Pulmonary Disease (COPD) Stage II”. 

What are the challenges of managing both bipolar and COPD?

There are short and long term challenges. My first reaction on COPD diagnosis was numbness. I still remember sitting outside the hospital with tears rolling down and asking the question- “Why me?” COPD was third chronic illness to attack me - first two were bipolar disorder and diabetes Type II. When I was diagnosed with bipolar it was like a “Life Sentence”. But the COPD diagnosis truly came as a “Suspended Death Sentence”.  COPD has no known cure. What part of the lungs are damaged cannot be undone but the balance of lungs has to be protected in this disease which deteriorates with time. I tried to slow down after COPD diagnosis and shifted to a saner place Pune as compared with cacophonic Mumbai. 

Presently, I am on two different types of inhalers. As regards side effects, I do not know any medicine which does not have side effects. I take psychotropic medication prescribed by my psychiatrist as I have chosen “saner new normal life” with medication as against “near certain lunacy” if I do not take medicine.  In case of COPD, I know long term use of steroids have side effects but again it is what one has to choose - Life or Death.

Fatigue and weakness are significant effects of COPD – how do you cope with that?

The COPD diagnosis initially sent me into three months of severe depression. I walked and exercised out of the depression, fatigue and weakness. Biggest help is provided by my wife who tries to ensure a regular routine when I am home. ...Continued Below

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How do you manage to motivate yourself despite all your health issues? 

Since childhood I have been a fighter -  against extreme poverty (as a child getting even two square meals was a challenge), childhood sexual abuse,  early stammering, stuttering and dyslexia,  clinical depression, anxiety, suicidal ideation including attempts, manic attacks and all culminating into bipolar disorder.  I have taken COPD heads on, as just another beast to be conquered. 

I keep myself motivated with work and my piece of writing on key infrastructure challenges and social issues facing the country.  Having lost out for decades I also want to spend more quality time with my wife who has suffered more than me due to my illnesses.

You have often talked of the support of your family. Did you and your family receive counselling? 

No. In my case my family never received any counseling, nor was the need felt. Managing my illness has been tough on my family but they have done this despite their own suffering as caregivers. I am blessed with strong family support. Firstly my wife has proved to be of steely frame and, let me tell you candidly, it is almost impossible to deal with mercurial mood shifts, more so rage and uncontrolled anger of a person suffering from bipolar disorder. While manic attack and depression may be episodic, the mercurial mood shifts and anger/rage often is a daily occurrence.

Also due to my illness, both our sons have been reared in a single parent family and prematurely forced to "play dad to their dad", unfortunately.  However, I strongly recommended caregivers and family members of sufferers of mental illness to get proper counseling. Sadly, India does not have many counselors.

Studies have indicated an increased risk of COPD for people with bipolar? Would you have done anything differently, if you were aware of this connection?

I am afraid I could not have done anything different had I known about the study.  When I was diagnosed with COPD, I did not even know what it meant and that it has only four stages with Stage III being of oxygen support and stage IV being the end stage or ventilator stage.

To the best of my understanding, etiology of COPD like that of bipolar disorder is still a mystery. There are statistical correlations. Persons suffering from bipolar disorder have more increased risk of COPD. Similarly, smokers are supposed to be at greater risk. Mayo Clinic website says 20-30% smokers develop COPD. But one thing is clear to me, statistical correlation does have relevance for epidemiology but it does not give a clue for etiology. Also, look at this years WHO Report on Air Pollution; it says 48% of all death in the world due to COPD are attributable to Air Pollution. 

Did you face any stigma or neglect from healthcare professionals, friends and family? 

Stigma is endemic in society.  I also have faced from time to time but in my case it has been more muted and subtle. Nevertheless the stigma hurts.  Often I have faced stigma for my being crusader for the cause of mental illness. But someone has to carry the cross. I have been lucky, but most others are not. My way of handling stigma is to increase the war on removing stigma. It is a hundred year war. When my story was published first a decade back, I was the first Indian to open about my mental illness. Today, more and more people are coming out including celebrities.

Only last month I met two film stars representing two  generations at Chennai on the occasion of 25th Anniversary Celebration of founding of The Banyan, and was humbled to find veteran actor Revathi (having worked in 200 movies) and Young Turk actor Shruti Hassan talking about their fight with mental illnesses to the gathering. Yes stigma is there. Mental illness warriors even in developed countries face stigma. But stigma will taper off. New Mental Health Policy, New Mental Health Care Act, Decriminalization of Suicide Attempts, Medical Insurance for Mentally Ill are all moves in right direction. But it is and will remain for quite some time work in progress.

Any advice for people with bipolar or COPD?

Both have different existential calling. I give only one advice - Never Lose Hope. It is never over till it is over.

And lastly, please quit smoking it is bad for both bipolar and COPD. Rather smoking has no good. Also please pray that I can quit smoking sooner.

Read: How I Finally Quit Smoking