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Submitted by PatientsEngage on 30 March 2019
A spectacled woman with a white shirt, purple bow tie and black waist coat

Shambhavi,25 who was diagnosed with Bipolar Affective Disorder talks of her own fears and misconceptions about the condition and how speaking up helped her build a support system around her. 

I am a queer feminist and a writer at Youth Ki Awaaz. I use she/her pronouns. I have been diagnosed with Bipolar Affective Disorder (II) for which I am undergoing psychotherapy and psychiatric treatment.

What were the early symptoms?

When I was a teenager, I would be seized by bouts of restlessness, often staying awake till very late in the night. Summer vacations were full of these behaviours that came on and off. At the time they weren't very noticeable and I always put them down to being a bored teenager with too much spare time and no place to channel my energies. As I grew up, I began to experience more and more depressive phases, one of the worst being in 2014. Between these phases, I would suddenly be invigorated with a zest for life, wanting to do many things at once, but having very little capacity to actually concentrate on them all. It wouldn't last for more than a few days, and I would spiral down into my depression soon after. It wasn't until 3 years later that my therapist highlighted the occurrence of the “high” phases that popped up every now and then. I was made aware of how those phases were characterised by poor impulse control, rash decision making, little to no attention to consequences, risky behaviours, irritability, and skyrocketing energy. My therapist pointed out how it was all followed by “low” periods that lasted for days, weeks, or even months.

When were you diagnosed with Bipolar Affective Disorder?

I was diagnosed in late 2017. My therapist at the time had analysed some of my behaviours, and without labelling or identifying any disorder, very gently asked me to follow up with my psychiatrist and communicate my behaviours to her. My psychiatrist made a record of my behaviours and then diagnosed me with BPAD, prescribing a low dosage of lamotrigine to get it under control. Initially the medicines made me very groggy, but eventually I adjusted to them. Soon the effects began to wear off, and I was prescribed a higher dosage. Today I have found the optimum dosage for me, and have been stable for a long time with the help of therapy.

By the time I was diagnosed, my BPAD had progressed a lot. The signs were recognisable now: rapid speech, high energy, inability to focus on one task, disjointed thoughts, running on very little sleep, being unable to fall asleep at night, and more.

As far as I know there is no history of bipolar disorder in the family. But my family has never been one to think about, let alone diagnose, a mental health issue.

How did you react to the diagnosis? 

It was very difficult to try and rein in the pace of my life. The first thing I had to do was to fix my sleep cycle. I tried downloading screen dimming apps on my phone and limited screen usage so that I could restore my natural circadian rhythm. But it proved to be difficult with my lifestyle. Getting out of bed on “low” days seemed increasingly impossible. I felt really conflicted about associating the word “bipolar” with myself, and had to really try and get rid of that stigma. I was scared, because of all the things people say about BPAD (both lay people and mental health professionals), I was scared of turning into a monster.

But when I started speaking up about it, it really helped me. I was able to communicate my condition to my friends and peers, and make them understand why I did some of the things I did, why I needed space sometimes, what my triggers were, and also what they could watch out for if I was hitting a high or low. That earned me a support system. If anything, having BPAD has only added a new perspective to my worldview and I have stopped seeing it as a curse, but an avenue to empathy.

What medications are you on?

Before I was diagnosed with BPAD, I was put on a very strong dose of Paxidep, an antidepressant that I later found out had horrible side effects (tremors, photosensitivity, sensitivity to sound, the feeling of burning or ice on the skin, palpitations, and even extreme moods). Not only this, I read that it had been banned in some countries. The withdrawal was harsh. I would simply not be able to move and felt like I was dying. If I forgot a dose, I paid heavily for it, and soon became dependent on that drug. To get out of that mess, I switched to Nexito and phased it out gradually. There was a gap of a few years before I decided to give medication a shot again. This time I was put on Nexito and then Cipralex (escitalopram). The latter suited me better, and I felt in good spirits. But using an antidepressant as an undiagnosed BPAD person, it spiked my hypomania. I then had to be put on Lamitor (lamotrigine), a mood stabilizer, and about a year later, my doctor added a second mood stabilizer called Oxetol (oxcarbazepine).

What were some of the challenges you faced and your advice to those who face similar challenges?

Medicines affect your biochemicals. Your brain on drugs does a lot of weird shit. The key to not freaking out is to make a distinction between what your depressed brain is saying and what your stable brain is saying. I would say recognise your symptoms, behaviours, speech, recurring thoughts and feelings, and make a list of them. Then, whenever you're hitting a high or low, be aware of what patterns your brain is following. Recognise that it is a brief moment, it will pass, and you feel good again. One of the most useful things I have learnt is to realise that my brain can trick me sometimes. It can trick me into despair. When I catch that, I can fight it.

Another challenge I faced was with medication. For me personally, it went smoothly. However starting any new drug always left me feeling groggy, tired, irritable, nauseous, but only for the initial few days. Eventually, I got back to work, I had stable moods, I had a good outlook to life, and I was able to focus and execute roles as a worker, a flatmate, a friend, a child, a parent to dogs, and even a client at my psychotherapist's.

Have you learnt anything in managing in your condition that you wish you knew before?

It was a rather painful system of trial and error for me. Perhaps the trick of recognising the signs and not being swayed by them would have been very helpful to know. For me right now, therapy is one of the few things that really works, and I only wish I had started earlier.

Are there myths regarding bipolar that need to be busted?

So many. I've actually made a comic about some of the things people (incorrectly) assume. The biggest myth though is that (as debilitating as it can be for many people) BPAD prevents you from leading life on your terms. With a combination of medicine and psychotherapy there's honestly nothing you can't do!

What are the least understood aspects of bipolar?

The poles. People, including myself a few years ago, always assume that BPAD means you are overjoyed one minute and then feeling blue the next. Everyone sees it as “just mood swings”, when actually it has nothing to do with being happy and being sad. While we are slowly starting to understand depression, hypomania is never talked about.

Have you had to make some changes to your lifestyle because of your condition?

Trying to sleep by 11pm as a 20-something media professional has been one of the hardest things I've been doing. I had a terrible routine through school and college, and with work my sleep cycle only got worse. Without proper sleep my hypomania is likely to get triggered and sleeping in time is a MUST for me. I'm still trying to succeed. Another big change has been the elimination of alcohol and marijuana. These are just some lifestyle choices that a lot of people my age make, and I have to ditch them both to stay stable! The antidepressants have made me gain weight, so I have to watch my diet and exercise more (still to happen!). And finally, I'm learning how to regulate my emotions better. Earlier, anything would be an emotional trigger, and when I reacted in unhealthy ways, things just got worse. As I learn to manage my condition, I think I am becoming a more patient, open minded, empathetic person.

How do you cope with the highs and lows, especially at your work place?

There are times when I don't cope at all. I simply go off radar and don't show up at office for days at a stretch. I know it puts my colleagues under a lot of stress, and when I do go back to work I am so riddled with guilt. On one particularly bad day I had to lock myself in the washroom and cry for an hour. But as I started medication and therapy, things got better. I clearly communicated to my team that I had BPAD and what it means.

Highs are difficult to spot because I often assume that it's just a boost in my productivity. In fact, work is where I have to be careful about my hypomania. We're all conditioned to be manic workers and so it sometimes slips my notice.

The lows are somewhat easier. I can take a time out, I can cry without being judged, and people are always there to help you.

Has it been difficult emotionally to cope with your condition?

It's been extremely difficult. Not being aware of what triggered those moments, and not knowing why those feelings were so intense and diametrically opposite did a lot of damage until I was taught to recognise and try to control them. It was draining to say the least. Depression convinced me to isolate myself from my friends and family. Hypomania urged me to aggressively seek their company. I'm sure it was emotionally complicated for friends who never really knew what to do with me, when to give me space, when to engage with me. I imagine it was like walking on eggshells, particularly for my mother. She even used the phrase.

I began to see myself as worthless, unreliable, and a constant source of irritation and pain to others. In turn it only made me spiral downwards. Alternatively I used to summon up very arrogant energy and try and believe I didn't need anyone. That's my experience though.

How has your family supported you?

When I decided to admit myself to Vimhans it was my father who decided to stay with me for nearly a month. It was a big step for him as we have been very distant for years and years. It also helped along my recovery to actually get a chance to reconnect, even if briefly.

My mum has sort of figured out what to do and not to do. She isn't as hard on me anymore. She knows my triggers, she know when I need space, when I need comfort, when I need a kick in the butt (tough love is her specialty!)

My girlfriend has been my absolute rock through this all. She's a lot like my mom with the tough love, but also shares that sensitivity.

My friends have learned that the best course of action is to keep some distance while still maintaining contact over my preferred mode of communication (WhatsApp). A lot of them have also tried to understand BPAD, by asking questions, reading, and listening.

What kind of specialists do you consult and how often?

I visit my psychiatrist about once a month, and I see my therapist every weekend. My therapist is a young, queer, friendly professional, and a rare find to be honest! My psychiatrist on the other hand did offer to send me to a counselor in Vimhans, but I prefer my current therapist the most.

What was the hardest part of the treatment? What were your challenges and what were the accompanying solutions?

Correcting my sleep schedule and giving up alcohol for at least 100+ days. These were the physical bits. It took many apps and alarms and stern instructions from my parents and girlfriend. I still don't always get the sleeping routine right, but I don't want to give up as much anymore. On the emotional side, I had to learn to manage the turmoil within me. It was so abstract and constantly shifting and so complicated that I had a tough time ever recognising what I was feeling at any giving moment. My therapist then suggested trying DRDT (Daily Record of Dysfunctional Thoughts), which helped me slow down, analyse, and understand. I think also trying to return the empathy I was given was a good way to heal. I'm trying to see things from another person's viewpoint.

Is there any personal anecdote that you would like to share with us?

The biggest obstacle to mental health care right now is shame. When I pulled myself out of its clutches I was able to get the medical help I needed, receive psychoeducation, and speak more openly about my BPAD. Through it all, I found many other people living with BPAD, and we became a support system for each other!