The South African Depression and Anxiety Group invited me to speak about my experience living with Bipolar Disorder for their awareness program around living with mental illness.
These are the notes from my talk in 2015, at the Akeso clinic in 2015.
Good morning everyone. Today I'm going to be a bit selfish and talk about myself. I was very kindly asked to speak about my experience living with Bipolar Disorder.
Two things I want to start off by saying. 1- Everyone experiences bipolar disorder differently which leads me to two - we can all relate to the symptoms.
I'm going to be as honest as I can be. I've had a patchy memory due to the disorder and my medication but I refuse to let that stop me from sharing my story.
Many people ask me where this all started and I tried to think back - way back.
I tried to think of where my first experience of being disconnected from the world originated. I was taken back to when I was 7 years old. I was molested by a family friend. That night while I lay in bed, I was hypnotized by Casper, the friendly ghost. He came, with his uncles and he kept me distracted from the fear I had inside- that that family friend was going to get me in the night and finish what he started. I know that it sounds strange but losing touch with reality really helped me.
I grew up a bed wetter and remained afraid – especially of the dark. I would lie in bed, always facing the door left slightly ajar. Just enough for me to enjoy the light seeping in- enough light for me to be see if anyone was entering my room. I was always a sensitive child, but no one could understand why. And neither could I. I always felt very different from other children- inexplicably sad- sensitive- bruised. My father at the time saw this as weakness and constantly tried to change this. His methods did more harm, I think, and stressed me more.
Years pass by and I find myself in university for the first time. I befriend the Student council president and end up being one of the most popular people on campus. I lived away from home and found myself drunk every week- travelling to the city, dancing in clubs I was way too young to be in. I could see myself as if to look at myself from a distance. That's where the out of body experiences started. I was a hot mess as they say. Everything was in slow motion. I couldn’t find myself. I couldn’t connect with reality. And that’s how my life went, being the popular girl in student leadership who couldn’t maintain her studies.
One of the biggest events in my life was when I first attempted suicide at 19. I had just dropped out of university and was dating someone 15 years older than I was at the time. I felt like was failure and a liability to my family. I couldn’t deal with the torment inside- the whirlwind of being different, being sensitive, not being able to feel like fit in. I didn’t want to die, I just didn’t want to exist- if that makes any sense. The suicide attempt seemed to come out of nowhere to everyone else. They didn’t pick up on the way I felt, because I was a very quiet person. I couldn’t articulate the untouchable pain I was feeling. My family was distraught. They felt like they failed me and that made me feel even worse. The psychiatrist at the time just told me I have two sides to me and that I was just very sad- nothing I have to worry about. He was wrong.
I fell pregnant with my first born soon after the attempt. Life couldn’t have gone more “wrong”. My parents decided to relocate to Cape Town from the Free State. Although we had family there, I felt lost and was forced into a single parent situation. I decided to start studying again and it wasn’t long until I found myself being a student leader again. I started a student organization and was chairperson of and founder of a few more. I excelled academically, but only initially. At university, I was surrounded by opportunities to shine outside of academia. I had millions of ideas - often feeling like I was going to burst. People loved me. I was Miss Personality. I exuded all kinds of awesome.
But soon, things began to crumble as the semesters passed. Bright ideas became bigger and bigger. I was going to start an intercontinental magazine, and an online business all while being a single parent, working part time, a student leader and well, I just couldn't keep up. Of course I wasn't sleeping. And I was sleeping with many guys. The shame that goes with the hypersexuality is just unbearable. Every relationship was the one. Each one of them filled with so much intensity. That was me.
A ticking time bomb.
In my third year of studying at university I became physically ill- suffering from major headaches and stomach problems. I was hospitalized often. And always discharged with them not knowing what was wrong with me. What followed was “the crash”: days of being in bed, not taking my son to school because I just couldn’t get up. I’d put my cell off so that I wouldn’t have to speak to anyone. Team members of projects and varsity staff looked for me. I wouldn’t shower for days. I’d just crawl into bed. And sleep. Negative thoughts like I'm a bad mother, I'm a bad girlfriend, I'm a failure, I can't function; I'm worthless would spiral on and on in my mind.
Finally, I was diagnosed with Bipolar disorder in 2011 by a medical doctor on campus. I was advised to see the psychiatrist but he was reluctant to accept the diagnosis. When I researched all the symptoms- I could see myself in every line. I could see the manic me and I could see the depression as clear as day. I just couldn’t see why he didn’t see it. I decided to see a new psychiatrist closer to home. He diagnosed me and started me on Lithium. My parents lived abroad and so my support system wasn’t really of the best. My sister didn’t understand the illness either. They couldn’t understand how I was unable to function. This was someone who won student of the year for goodness sake! I failed to see my therapist. I didn't comply with my medication and eventually things became worse.
At one stage I was in such a bad state that I couldn’t walk and my eyes refused to open. My body was shutting down. The neurologist on duty at one of my hospitalizations said that that this is all in my head. My then boyfriend at the time decided to research what the disorder is all about. He took it up on himself to make sure I was taking my medication and going to support groups. He travelled every day from St Helena bay to Muizenburg look after me. To care for me. To get me to a point where I could look after myself. This took years.
I fell pregnant twice again and this caused havoc for my disorder. I would lay in bed and see the charger cord and see myself end my own life. The medication just wasn't keeping me stable. I must mention that thoughts like that still plague me when my anxiety levels rise. It's like I flip to my default which is to rid the world of me. When I'm drinking a glass of wine or cool drink, I envision myself breaking the glass and hurting myself. These are real thoughts that come from my mind which I can't control. It's all scary.
With the initial diagnosis, I felt very alone. Nobody was talking about bipolar disorder, instead they were joking about it. I decided to start looking for support online. And I found a world of voices who echoed all my experiences. Unfortunately very few were South African. And that's when I decided to start a blog called Our Lived Experience- a place where people are welcome to contribute to share their lived experiences of living with mental illness in SA. Our lived experience was born out of the value one gets from shared experience and the healing that comes from it. We are team of four bloggers who live all over South Africa. We each have unique views and experiences with the disorder which makes for great reading and insight. We have been blogging for a year now but we are less successful than our UK, U.S. And Canadian colleagues also fighting the good fight. South Africans are just not talking openly about mental illness, more specifically bipolar disorder.
When I went public with my diagnosis, I felt like it liberated me. Then I again, I felt like I had nothing to lose and more to gain. I didn't want to be caught in its grips anymore. I disclosed my diagnosis at work but I found limited support- there was just too much stigma attached to the illness and very little knowledge about how to support an employee with mental illness.
We've found that sharing stories work similarly to how support groups work- in that you form relationships with people you can relate to. They give hope. And they provide healing for those who write them. WE have noted a decrease in the stories being shared though and it's sad to see. I use my spare time to advocate for a stigma free South Africa. I use my time to speak about the hurt that this illness has caused - but I also talk about how far I have come. I'm a living example of how far anyone can come. I am proof that you can have a good life. Sometimes the illness overpowers you but it's important to note it's not you.
Going through my episodes I have learnt that early intervention is key. I unplug myself when I am manic. Okay those around me unplug me. With the whirlwind of ideas and energy I find it difficult to Say no.
During my depressions, I Sleep. It's the cheapest form of medication. I go to my therapy sessions to Work through feelings of guilt and shame. I have to work hard to Forgive myself and try Not be so hard on myself. I remember that I have to Love myself. I have to Accept myself. I have to Accept my illness. Bipolar disorder evolves over time, but just as it evolves - you have to remember that you're growing and learning. Triggers change. But so do you. You have to keep working to keep afloat.
This is a life-changing illness but there's one golden truth I can share with you today. There is always help. There is always hope.
One parting thought. Your illness is your responsibility; your actions, even if they were wrong, and not your fault, are still yours. It is not to pin guilt, but rather to help you in being accountable and taking ownership of your wellness. Only you can do the work. And it takes a lot of it to be well. But you can be well. You can live a really good life.
Suicide Emergency contact number : 0800 567 567
South African Blog : Our Lived Experience
It was really difficult and also comforting to read what I had to say about living with Bipolar Disorder. I’d say difficult, because I see that not much has changed with respect to living these waves. They have not disappeared. But I am comforted by the knowing that I have survived many , many cycles since this talk.
I hope that I continue to do so.
I wish you well. Thank you so much reading my blog.