One professional psychiatrist shares his account of living with bipolar affective disorder.
Being on the other side of the table, is a phrase often used for situations reversed. In clinical practice today, we hear the experiences of the individuals with bipolar affective disorder (BPAD) in lay terms. At the same time, BPAD is an entity that has been explained in research by professionals across the globe. But what if the healer becomes the wounded? Here we present to you a brief communication with a professional who has been on both sides of the table, thus sharing his distinctive and remarkable experience. He is a senior consultant psychiatrist and has been in successful practice for more than 5 years now.
In your professional and personal experience what is the most common reaction to being diagnosed with BPAD?
In my opinion, the most conventional reaction is not fear, apprehension, or worry, it is the confusion. In a country like India, due to limited resources, health care access, and time constraints, many professionals are often unable to properly explain the nature, course, and prognosis of the illness. While psychoeducation is an important part of the management, due to unfavourable psychiatrist patient ratio and time constraints, this aspect is often omitted. Many patients are then left with nothing but unreliable information either portrayed by media or the internet, which leads them to think that BPAD is like having multiple personalities, an illness causing complete dysfunction, something that is uncontrollable—or worse—incurable. In my view, once the illness is explained with adequate psychoeducation about the treatment, advantages, and disadvantages of taking medication, many patients tend to settle down and that confusion is converted into rapport with the psychiatrist.
What was your initial reaction to being diagnosed? Have you ever been misdiagnosed?
Personally, when I recall, in my final year of medical training, I had no experience with psychiatry or mental health issues. Getting diagnosed with BPAD was more of a relief in my perspective to finally know about my condition and understand what was happening. Unfortunately, like many patients, I was misdiagnosed in the initial stages of my illness with schizophrenia. I went into denial and did not research anything about my symptoms or my illness. I went on with my life. But I know now that, long term, that ignorance would have been harmful.
What are initial reactions of caregivers at the time of diagnosis? What are the common pitfalls at the time of BPAD diagnosis?
For patients and caregivers, being diagnosed with BPAD may result in initial confusion. A major pitfall during diagnosis of BPAD is that, as clinicians we are so rigidly trained and attuned to tick boxes and criteria that we often forget that our brains do not follow a textbook. Mania can be misdiagnosed as hypomania, borderline personality disorder can be confused with mania, and so on. We should aim for an open-minded approach and rather than focussing on labelling. Similarly, in the western world, guideline fulfilment is rigid and insurance becomes a trouble when it comes to mental illness. Surely, we all know the elaborate discussion of the pitfalls is beyond the scope of this narrative.
Please share your experience of first episode mania. Were there any differences between first and subsequent episodes of mania?
Mania was not a scary experience for me. I remember parts of it very fondly. Recalling my first episode, I remember I had zero insight, and was ignorant about it. I felt like I had multiple superpowers all at once. It was an escalation of the basic joys of life. I felt a high, but I am glad that I did not carry on in ignorance and got professional help.
My 2nd episode of mania was after a 7-year gap. Meanwhile, I was much more aware about the warning signs of an active episode. I have some recollection of the first episode of mania, but I do remember my subsequent second episode clearly. I was working in a peripheral service centre when I started having trouble sleeping for a few days. I recall being invited as an expert witness in a session court. So, there I was, presenting a case and had a “nice” conversation with the judge. The judge however, later mentioned that I did not need to return as an expert witness. Strutting out of the court, I called my father and told him how happy the judge was after talking to me. He must have sensed something odd, because as soon as I came back to my house, my parents said something is wrong and advised me to take a low dose antipsychotic, which I refused.
Later that day, sitting in my room, I reflected on my behavior and finally decided to take the pill. Due to the awareness and support of my family, I curtailed this episode while it was in hypomania. But even after taking the medicine, the prime cause of distress was not the symptoms but my obsessive thoughts. I would have racing thoughts and would be too self-conscious. As medication took time to act, I would exhibit repetitive questioning and checking from my family members if I was behaving “normally.” Its distressing for your loved ones to see you like this and I did appreciate later what they went through. I think that is why ignorance is a bliss, because awareness of symptoms made me differentiate between usual and unusual and it was quite distressing.
Here, it is important to understand that an individual going into mania is not necessarily devoid of insight into their illness or psychopathology. Timely medication and sensitive dealing prior to the episode will ease the fright of patient and motivate them to participate in treatment.
Please share more about your first depressive episode experience.
My first depressive episode occurred in mid to late 2006. It was a difficult time as I stopped socializing with others. My friends would check up on me and I would actively opt out of going to social events. Throughout 2007, I did not have any episodes. The most severe depressive episode happened in 2008. That depressive episode was without any stressor and the guilt was overwhelming. I would have self-deprecating thoughts and would endlessly self-compare with others. No matter how many medications I took, I would sleep all the time and there were a lot of crying spells. I spent the better part of approximately 4 years in that state, lasting until 2012. The peak of my depression was in 2009 when I stopped eating, as every action including eating seemed futile. I was filled with complete nihilism and emptiness. That was the most crippling phase of my life I would say. It was around that time I was offered electroconvulsive therapy, but like many caregivers, my parents refused out of apprehension. The actual game changer was cessation of valproate and initiation of lithium in 2012. Since starting on lithium, I have had no active episodes. I did have a reactive episode of depression in 2019, which was precipitated by the ending of a significant relationship, but otherwise medication has helped me a lot.
How can you differentiate between normal ups and downs and an active episode?
I have an anankastic personality, so it is a bit of problem but I keep an eye on minute details. Therefore, when I am happy, there is this nagging feeling I might end up in mania. But with time, you get to know your relapse signature. In my total 17 years of illness, I have had 1 full blown manic episode and 1 hypomanic episode. The major differentiating feature is sleep disturbance, both in depressive episodes and mania. I have dealt with depression way more than mania. So, I know my relapse signature: it usually starts with irritability, which my family members will notice too. However, being a professional, I manage my own medication and it has been a positive experience so far.
What do you think is most important for a good prognosis?
I would mention here that there are 2 vital reasons for my excellent prognosis: (1) my interpersonal and social support system and (2) my rigorous medication compliance. Just like any caregiver, my family does have certain issues with stigma related to the illness and others getting to know about my diagnosis, but they have always supported me in every possible way. My close friends are supportive, and they would often seek professional and personal advice from me. Additionally, regular compliance to treatment is very important.
What are certain pitfalls while treating the BPAD?
I think there are several pitfalls, but most important is poor redressal of the confusion. We focus too much on mania and do not explain depression to the patient or family members. After an active episode of mania, depression can often be mistaken for normalcy in the initial part and pure laziness after. Thus, in my professional opinion, ignorance and confusion are the major problem. It is important to educate the patient and family members, and even more important to emphasise the need for medication. We need to be timely and avoid the nihilism that might build inside a patient, who hopes to reduce and stop the medication altogether.
The other mistake often made is not assessing the choice of mood stabilizer correctly. In my case, I was kept on valproate for a long time despite having adverse effects and no contraindications for lithium.
Along with the provision of psychoeducation about the illness and need for treatment, it is important that we teach patients about the relapse signature as well. They should know the warning signs of both manic and depressive episodes and how to maintain mood charting. Deviation from the usual pattern of sleep for 2 to 3 nights is a clear-cut indication of the impending episode. While prescribing, it is beneficial to inform the patient about the nature of treatment and any possible adverse effects of the medication. If the patients and caregivers are not educated about the medication as its adverse effect profile, they are going to get frightened and stop the medication.
What is the biggest “don’t” for a caregiver managing an individual with BPAD?
One should never blame the patient for the episodes or the actions in the active episodic state. It is gut wrenching to know some caregivers do that. Once the patient is recovering from mania, one should not blame or make them recall all the things they did. Never criticise the patient in the depressive phase. Bipolar depression is one of the most crippling things one can experience, it is difficult to treat and is often long standing. Patients with BPAD are often high achievers, and it is cruel to shower them with criticism about not being able to do something in life.
What take home messages do you have for clinicians and patients?
To all the professionals, I would like to add that BPAD, just like multiple other illness, has a polygenic inheritance therefore, patients are prone to metabolic impairments. I developed type 2 diabetes a few years ago. Looking back, I feel that could have been avoided or delayed if I was more active. Therefore, it is beneficial to tell patients in the first consultation with health services to be physically active while maintaining regular compliance.
I feel that having personally experienced what many professionals read in textbooks, I can relate with patients and caregivers spontaneously, irrespective of their diagnosis. Therefore, my illness has played a crucial role in my empathy and ethical clinical practice towards individuals with mental illness and made me the contented clinician I am today. Similarly, patients with BPAD should not feel like their illness is a crutch. Yes, compliance to treatment is the ultimate game changer, I believe. Truly speaking, I see my glass way more than half full and that is what I want to convey to all the patients battling this condition. Win that battle. I know you can.
Note from the author: My sincere gratitude to the astounding clinician, who is an inspiration to millions of others out there, for sharing his valuable insights and providing a transparent mélange of personal and professional perspectives towards an important diagnostic entity. We need more of such bold and ethical practitioners like him who share their experiences out loud in a society and world full of stigma. Their story can be life changing for millions of others out there struggling with BPAD.
Dr Kaur is a consultant psychiatrist in Punjab, India.