I am deeply disturbed by a video, which has been going around for the past few days, depicting my husband’s experience of being my main caregiver since I was diagnosed with bipolar disorder three years ago. It is a video produced for a channel called Narasi People (People’s Narratives) on Narasi TV (Narrative TV), an online media established by one of Indonesia’s leading journalists, Najwa Shihab.
The very title itself, “Istriku Bipolar” (“My Wife is Bipolar”), shows that the people behind this video are completely clueless to how language can discriminate and stigmatise people with mental disabilities―an irony since words and language are central to their field of work. Mental illness, just like any other physical illness, does not define who someone is. It is a condition that they have to face and, oftentimes, struggle with every single day of their lives. If, God forbid (one illness is enough, Dear Lord), I suffered from diabetes, would they use the title “Istriku Diabetes” (“My Wife is Diabetes”―wow, it can’t even be translated properly!)? This would also be offensive to people who have diabetes!
If they had spent a bit of their time to do at least a Google research on the issue, they would find that many mental health activists around the globe would prefer to say that someone “has” (not “is”) bipolar disorder. I realise that to translate that to Bahasa Indonesia one would have to say “[Saya/Aku/Dia/Mereka/Istriku/Suamiku/Saudaraku/Anya] Menderita Gangguan Bipolar” while the word “menderita” (“suffer”) in Indonesian can also be problematic as it implies a situation of utter helplessness. However, it is actually very easy to work around it―just use “Hidup dengan Bipolar Disorder” (“Living with Bipolar Disorder”). Simple, close to reality, compassionate.
Now, the caregiver angle. My husband, Mikael, and I share the same concern that caregivers need to find a solid support system, too. They need to take care of both their physical and mental wellbeing, something that sometimes overlooked by the caregivers themselves. Having said that, though, no caregivers would allow anyone portrays the people they are caring for as weak and incompetent.
This video has depicted me as powerless, an inadequate partner to my husband and mother to my child, and unable to manage my emotions. This is a stigmatisation through and through. It takes for granted my efforts to get better day by day (while battling the stigma surrounding mental health issues―like this video!). I was diagnosed only after I had a major breakdown that sent me to three different ERs and forced me to be hospitalised in two different hospitals in a month. Of course, this would affect Mikael and Jae, who just started her first year at elementary school, in ways I myself cannot even begin to imagine!
As any parent would feel, even when I was still undergoing intensive treatment, it pained me to see my child cry and unable to tell us what bothered her. I, of course, blamed myself. In fact, I blamed myself for every single feeling, thought and action―not only those of mine but also of my family’s. I assume from their lack of knowledge about stigma, the team behind this video is not aware that there is such a thing as self-stigma. It is a particularly vicious cycle that just goes on and on, which takes almost everything of me to get out of. So, to see how the team sensationalised that bit of my experience and totally erase my voice from the narrative, I am appalled and downright angry.
For the last three years, the three of us has dealt with my condition and other things life simply threw at us, be it connected or not connected with my bipolar disorder, together. If anything, the three of us are now more in tune with our individual mental health wellbeing. This is also part of a caregiver’s story but I do not see this portrayed in the video.
Instead, this video perpetuates the problematic power relations between the “benevolent” male (husband/father) and the “hysterical” female (wife/mother) figures. There is no one champion in this type of situation. If a member of one’s family is sick, the whole family deals with it together. At least, that’s what my family chooses to do. For the record, my husband does not take over my “role” as a mother to our daughter. We are both committed to our “roles” and responsibilities as parents and partners. (Yes, I added apostrophes there since we believe assigning roles to people based on their gender brings about inequality and discrimination in society.) To help Jaemanis process the traumatic events the three of us were experiencing, we―as in Mikael and Anya―decided together to seek help from a child psychologist. We believe we had done and would always do everything in our power to give the happy childhood every child deserves to Jaemanis.
As for myself, I have sought and undergone treatment so I am now able to recognise my triggers, monitor my mood swings, practice ways to manage emotions while solving whatever problems that come my way. Of course, I still need support from my husband, daughter, extended family members, friends and both my psychologist and psychiatrist. When my neurotransmitters start to glitch (um, yes, bipolar disorder is a clinical condition), I know who to turn to, has my back and will help me keep my spirits up when I am feeling down and remind me to prioritise when I feel like I can do twenty-four different tasks in a day. They also know when to leave me alone and not blame me for needing that space, or sit next to me quietly until I am ready to share my worries. Then again, isn’t that what family and friends do to each other, given that life without mental and/or physical illnesses is already pretty hard?
I would like to stress once again that many people with mental disabilities experience double stigmas, not only from the society but also from themselves. Stigmas, in any form, prevent them from seeking and getting the treatment they need. I believe that for us as members of our community to carry on with our ignorance and put people who are struggling to cope with their mental illnesses as well as their caregivers in an excruciating position is completely unacceptable.
My husband and I agreed to take part in this video because we wanted to show people that bipolar disorder―just like any other disease, mental or physical―does not only affect the person suffering from it but also the people close to her. Still, that does not hinder them―both the persons with mental illness and their caregivers―from trying to contribute to the society as well as live a quality, meaningful life. Bipolar disorder and other mental disabilities are manageable with proper treatment and support.
We then personally asked the team to be delicate with this issue. Especially since we have heard so many stories, from our friends and the people we met at mental health seminars, of how people with mental disabilities were still regarded as bringing shame to their families and/or discriminated in their workplaces. We also heard how some of them had to go through traumatising events, like being exorcised and/or shackled. It is a complex issue, which intersects with other aspects of living, especially in a country like Indonesia.
We asked for the list of questions and some of them were biased, uninformed and offensive. Please bear in mind that we did not expect everyone to be educated about an issue as sensitive as mental disabilities so we kindly asked the team to refrain from asking the problematic questions. But on the first day of shooting (there were two!), the team actually asked me to re-enact my manic episodes (!). It took us quite a while to explain ourselves.
On the second day of shooting, which happened unexpectedly, because they said they still have to take more footages (and promised it would not take long―nah, didn’t feel like a short time to me), the team asked me to cook. Well, cooking needs preparation. And from the previous interview, I already told them how I have stopped cooking and baking after my diagnosis because those activities reminded me of the stressful days prior to my breakdown. Yet they still had the audacity to ask me to do it. I firmly said no and told them that it would not reflect the reality of my daily life. But they insisted they needed footages of me doing something in the kitchen. Well, I decided to water my small houseplants, which I do every other day. Little did I know, the scene was to be used to portray me being manic!
They also promised us to show us the video before they put it up online, which obviously, did not happen. If it did, I might not have to write this response.
Okay, the video has garnered, in total, a few hundred thousand views on Instagram and Youtube. A lot of the comments were positive too, some even thanked Najwa for bringing this subject up. On the one hand, I appreciate that the video, at least, contributed something to the conversation on mental health in Indonesia; but, on the other hand, I am concerned that such contribution described mental illness from a heavily-prejudiced point of view. The fact that nobody recognised this made me actually sad because it just shows how many people have internalised the stigma the society has imposed on women and persons with mental disabilities (and, in this case, the person is also a woman!). Another example of how stigmas can come in the form of a superhero wearing a cape!
On their website, the Narasi team urges:
Mari bertukar ide dan beradu gagasan. Berkiblat pada idealisme dan nilai kesetaraan, mendorong setiap anak bangsa agar suka rela menggagas peran. Semoga apa yang tersaji di Narasi ikut memberi warna dan membentuk wajah dan kepribadian negeri.
“Let’s exchange and engage in different ideas. Act upon our ideals and values of equality, encourage our people to make their own contribution to society. Hopefully what is presented in Narasi helps paint the colour and shape the face and personality of the country.”
And now I urge Narasi TV to do just that.
Click on these links to watch the short and long versions of the video:
More on mental health stigma:
If you or someone close to you have issues with their mental health and need assistance, these links may be helpful:
Gratiagusti Chananya Rompas is a poet and writer. She writes, once without knowing but now with more insight, about the experiences and emotions of someone with bipolar disorder. She also writes about urban life, motherhood and family, and memories. She attempts to explore the relations between place and one’s imagination through her works. Her poems have appeared in several anthologies, newspapers and magazines. Her collections of poetry include “Kota Ini Kembang Api” (Gramedia Pustaka Utama, 2016) and “Non-Spesifik” (Gramedia Pustaka Utama, 2017). Her collection of personal essays is “Familiar Messes and Other Essays” (Kepustakaan Populer Gramedia, 2017). Her other works can also be found on her website gratiagustichananya.com and Instagram/Twitter accounts under the name of @violeteye.