Varsha (name changed on request) shares her experience of living with Schizophrenia for the last 18 years, how she has come to terms with it and how it has affected life and work choices.
WHO AM I
I feel I was a very different person before I was diagnosed with Schizophrenia at the age of 21. I was in my BTech college and things were fine, when suddenly this medical condition was shoved on me. And then I also went through a ‘Why Me?’ phase, because all my other friends were normal. It seemed like I was hit out of the blue. It took about 12/13 years for me to accept the condition. After 18 years of Schizophrenia I now say that I have learnt to handle difficult situations and I am not perturbed that much. I see friends who have everything and yet they complain. I think we should be grateful for what we have. So I am grateful that I am in a stable condition, I can continue my professional life, I can have an active social life, medicines work for me, I am not shunned and ostracised by anybody because I don’t have those manic behaviours when I am on medicines. And maybe I can do my two bits to help others as well. In the past 2 or 3 years lot of people have reached out to me and I have counselled them and that has been a very satisfying kind of feeling. Being a person who is able to function well at work and in social situations despite my illness, I have also come in touch with similar people with schizophrenia and we talk to each other and compare notes.
हिंदी में पढ़ें: सिज़ोफ्रेनिया के प्रबंधन के लिए पूरे परिवार का समर्थन चाहिए
FIRST ATTACK
I was in my hostel and one day I started hearing voices and I also started behaving differently. My friends informed my parents and they took me to a doctor. But what I do remember is that I had a boy friend at in a different city and the long distance relationship was contributing to a lot of emotional stress, which possibly may have been a trigger.
The psychiatrist I was taken to diagnosed it as Bipolar disorder. This was in 2003. In 2018 they changed the diagnosis to Schizophrenia. My condition which was diagnosed as Bipolar had at that time Schizophrenia symptoms as well. But eventually we realized that I don’t have low phases of bipolar condition like depression. I only had the highs.
I took one month to get back to my institute after my attack. Doctors told my parents that I wouldn’t be able to study, which was a big blow to my mother specially because she wanted me to study. She finally decided that I would study and she became my primary caregiver, even coming down to my institute when I had exams.
GETTING THROUGH COLLEGE
I had a relapse in 2005 during my 3rd year final exams. I was in the manic phase during my practical exams. Somehow I finished the practicals and I went away. I had to do a supplementary exam to clear my 3rd year. So when people were preparing for interviews with companies, I was finishing up for my 3rd year. It was very tumultuous. But somehow I was able to cope up and pass with decent grades. After my engineering I worked and then managed to get into a prestigious management school. There was not much acceptance in the hostel I was staying for my BTech and people wanted me out. It was better at the management school because very few people knew about my condition. In fact, at I was able to sustain the hard work, and I would work on projects from 11 pm to 6 am. The experience at the management school made me tough.
TREATMENT CHANGES
I’ve had a few relapses. One was because the psychiatrist had stopped the medication. He thought I seemed fine to him, so he tapered the medication. But 1.5 years after the tapering off, I relapsed. Another time was when I had not taken my medicine. In 2018, the medicine stopped working even though I was on medicines, and I had a relapse. My medicine was changed. It’s the only time my medicine has been changed.
PARENTS’ VIEW
My parents have taken all this rather well. They are very religious and believe in Karma and that we should be happy in the condition that God keeps us in. That is why I am happy that medicines are working for me, because I know of people for whom medicines don’t work and they cannot function well or even earn for a living. But some other people have been unkind and have advised that I should marry a physically disabled person because I have this condition.
INVISIBLE ILLNESS
A lot of people find it difficult to believe that I have Schizophrenia. They find it surprising that I am normal 365 days, that I don’t have any manic phases or depressive phases. Some people have ups and downs with the medicines. But somehow I am able to manage with my medicines, yoga and with lots of prayers. Spirituality has helped me a lot and has brought a lot of stability and acceptance in life. They don’t even believe that I have a condition because in most cases the condition is very apparent.
Some people with Schizophrenia are able to function well and manage things all the time. Some people are very well placed in the industry and they have good careers. I feel very inspired by them. Everybody is on a journey. They are working with their nutritionists, psychiatrists and psychologists. There is a whole set of consultations that you need to do to remain stable. You must learn to accept that you need external help and medicines and then life becomes much better. I feel with every passing year, I feel better. In fact, my doctor also asks me to go for physical exercises like cycling for a holistic improvement for me. And I also realize the truth in his statement that maybe I may not be able to withstand the stress of marriage where you have a kid yelling and/or the husband not paying attention.
WORK CHOICES
I am inspired by people with mental illness who are huge achievers, and I used to share a list of such people with my friends. It is said that in their manic phases, they were very creative and their minds were very bright. Because I have felt in my manic phases that my brain works super fast, and everything comes in a click. But then after the manic phase, the recovery is very long about 6 months to a year. My work life has therefore been unstable, and I’m 39 now.
I have had a few career breaks. When applying for a job, I have sometimes mentioned my condition. But my parents are of the view that people don’t understand the condition and sometimes recruiters have behaved weirdly with that information. So I don’t tell the recruiters. I feel interviewers are more understanding, so I share the information with them. But I try to stick to ‘health issues’, and don’t want to mention the condition specifically because people don’t always understand Schizophrenia. I only started talking about my condition in October 2020. I have actually been able to disclose it in a safe group of a few thousand people. I am still not ok to disclose on Facebook or Linkedin because I feel I would be judged. Since October 2020 I have counselled 10 or 11 people just because I came out and said I am a person with Schizophrenia.
FINDING A GROOVE
I am kind to myself now. These days I don’t read that much, I spend time with my mom. I pay attention to my diet. I enjoy my time around the house. I go for a walk or cycling. What I have to learn is to take it easy for some time. Because maybe I am always looking for something productive and. I don’t know how to take a break. In the break I ended up doing a data science course. When I am busy I am the happiest. Which is why I am looking forward to going back to work. But I do realize that I don’t need to burn myself out working long hours. So I am trying to establish a balance of 7 to 8 hours of regular work and not stressing myself out.
LIFESTYLE CHOICES
I made certain lifestyle choices that I would never drink, I would never smoke and I would try to eat right. Also sleep well. I was also into yoga for 2 and a half years, and it was very calming. I have also had a steady psychiatrist in Lucknow till 2015. And then I moved to Hyderabad and Bangalore. So I shifted to a local psychiatrist. So now I am with the Hyderabad psychiatrist since 2016.
LESSONS LEARNT
I have learnt to take one day at a time. A lot of people won’t understand the problems you are going through. Accept that you have a condition and learn to tone down your aspirations and expectations from life, including your professional life. After effects of the medication might make you sleepy early mornings or make you hungry. That is ok as long as you manage to stay healthy.
ADVICE TO OTHERS
I would like to share that mental health struggles are for real and it takes the entire family to wrestle with it. And you have to make a lot of compromises, both in career and personal life. And come to a situation where you can manage the ailment properly. So people should try and understand and empathise with the person with mental illness. We learn to cope with it over time, but it is not easy.
