PROFILE

Emily Kesuma: an interview with the founder of the Bipolar Disorder Indonesia Support Group

29 March 2019 • 12 minute read

Emily Kesuma is an entrepreneur, currently starting her own marketing consultancy business and a home catering business. She also happens to be the initiator of a Facebook Support Group that support individuals with bipolar disorder called Bipolar Disorder Indonesia, which currently has 1,852 members.

It is always an honour to be able to feature inspiring stories of individuals that are diagnosed with mental health conditions and still able to strive regardless of having the disorder. Emily Kesuma is an example of the saying: “I am not weak because I have a mental health condition but strong because despite having a condition, I too can still achieve the same things.”

I had the opportunity to do a written interview with Emily to talk about how she learnt her bipolar disorder diagnosis and the Facebook support group she created.

Seribu Tujuan (ST): Hi Emily, tell us a little bit about yourself!

Emily: Hi, I’m Emily Kesuma and I’m 44 years old. I was born and raised in Jakarta. I spent my college years in Singapore and came back home to work in the development sector (United Nations Organizations & International NGO). I worked there for almost 13 years, travelling around Indonesia in post conflict, post disaster and development areas. Due the travelling nature of my job, it was hard to keep a stable long term relationship with a man. And with my Bipolar condition, it’s even more challenging. Three years ago I met an old school mate, we fell in love and been together since and planning to get married this year in 2019! Currently, I am starting up my own business in marketing consultancy & home catering.


Receiving Bipolar Disorder Diagnosis

ST: Tell us how you found out about having bipolar disorder!

Emily: I discovered I had Bipolar Disorder (BD) in 2008, coincidently when I met this doctor. The search of a psychiatrist was meant for my friend who had Schizophrenia initially, but eventually later I consulted with him in asking questions of several issues I had in the past years and he addressed them and confirmed that I have Bipolar Disorder Type 2.  


ST: How did you feel at that time?

Emily: At that time I felt really relieved that finally I can understand ‘what’s wrong with me’ and it truly explains so many things that happened during the course of my life: the hell and struggles I dealt with myself and with other people. That was the first time in my life that I met and consulted with a psychiatrist.

I wished that I knew I had BD earlier in my course of life that I can better manage myself with treatments and therapy. I would be happier and didn’t screw up so much if I knew I had BD earlier.   


ST: How did your family or friends react to the diagnosis?

Emily: I was keeping it away from my family for almost a year. When I did open up about having BD, my mom later confirms that my father has some similar psychological disorder which me and my youngest sister might have inherited from him. We grew up having a difficult and challenging father who was very violent and had double personality. My mother, sisters and me, experience domestic violence at home which resulted in resentment and hatred towards my father. It does still trigger me to cry whenever I do watch certain scenes on TV that reminds me of the relationship I had with him. I also have a hard time remembering the struggles my mother had to go through in the course of her life.

On opening up to friends, it took quite a while for several years to open up to outsiders (non-family) about having BD for I was quite skeptical on the reaction and acceptance they would take it. First I would need to take a deeper understanding and knowledge about BD for myself that I can explain and educate others in a fashion that they wouldn’t see me as a freak.

Some of them who more likely open-minded and educated can comprehend and take it in a positive manner. Most of them consider I’m just a loony or crazy person, even my current boyfriend/partner who misunderstood what it’s BD and still has a hard time understanding me, my behaviors and thoughts. One of my bosses understands and can deal with me and consider me who has a higher intelligent / brilliant mind, but still struggles with my ‘downfalls’ (low depressive moods).


Medication and Other Treatment Options

ST: Any specific improvements to your quality of life after your initial diagnosis and treatment?

Emily: Yes, definitely! As I said earlier, I wished I knew I had BD and better dealt with myself and other people. Although from time to time, I can now sense when the mood swings coming and understand better ways to manage it. However, one thing that I still struggle with is the downfall; the depressive-manic cycle really disrupts my productivity. I can just do nothing, feeling so unmotivated to do anything, which I really hope with time,  I can learn to overcome the downfalls.


ST: What medications have you tried and what was your experience with it?

Emily: Initially in the beginning I took Depakote, later Risperidone. Depakote made me gained so much weight. Later I cannot afford those meds anymore and try to survive with CBT (Cognitive Behavior Therapy), which helps a lot, but without the meds, it is a big struggle.

When I started working with a better employer with insurance that covers mental health, I went to a better doctor (psychiatrist), who later prescribed better more expensive drugs such as Abilify (aripiprazole) and Clonazepam. Of course these drugs are much much better and made a better impact in my life. It made me calmer for sure, but do not entirely treat it completely as I still had erratic obsessive behaviors that was difficult to overcome.


ST: What non pharmacological treatments (e.g. counselling, mindfulness) have you tried and what was your experience with it?

Emily: I’ve tried  CBT and counselling sessions. It does help to make put things into better perspective, and also help me overcome challenging issues, especially on relationships and other life issues.
Recently I had several sessions of Craniosacral therapy from a friend doctor, which made me calmer and feel more grounded.

"First of all, you have to love yourself and accept the way you are. Embrace this BD positively and learn to deal with it. Educate yourself on it as much on it and for sure you can better understand what it’s all about, for sure it will gives you a confident boost."

Facebook Support Group

ST: How did you start the Facebook support group?

Emily: I started an FB support group with the name Bipolar Disorder Indonesia back in Feb 2010; to date it has 1,852 members. Almost every day, I receive requests from strangers to join the group. I made the group private and by request only, to avoid spam (porn, ads, etc) and also to target specific individuals with BD, their families or friends and those who are interested in BD.

During that time, I was so inspired and motivated in helping my fellow BD. I read so much books and materials on BD that I was quite well informed and educated on the subject. With the help of my doctor, he was willing to help and gave his full support in attending and facilitating the support group meeting sessions that I had on a weekly/bi-weekly basis. Unfortunately,  it became inactive as I was busy and was working mostly out of town.


ST: What are your future plans for your Facebook support group?

Emily: Having such numbers of members now 1,852 members and it grows each day, I realized that there’s a moral responsibility I need to nurture and take care of my members. They need help, at least to be heard on the issues and struggles they have. Most of the issues are they have no place to go to seek help and rejected by family and society. Lack of financial resources for counseling and medications are the major issues for the members majority.

Currently, I am struggling financially and focused on making my new business grow that I cannot do it on my own in making the support group grow, adding value and helping the members. I would need help from others, such as members or others (psychiatrists, psychologist, NGOs, other affiliates, etc).


ST: Lastly, what advice would you pass on to others that are diagnosed or recently diagnosed with bipolar?

Emily: I guess, what I’ll tell them is that I know it sucks to have this BD in you, which constantly is an ongoing battle and struggles with yourself throughout your life. And not everyone who is close to you such as family, partner, friends, and colleagues can understand and accepts you the way you are. First of all, you have to love yourself and accept the way you are. Embrace this BD positively and learn to deal with it. Educate yourself on it as much on it and for sure you can better understand what it’s all about, for sure it will gives you a confident boost. Also take the opportunity to educate those around you about BD to nurture a more supportive and accepting environment for everyone. Remember to get help and support in any way you can through support groups/affiliates, family and friends who can help. Most of all, stay close spiritually to the supreme being that you considered as your creator, God, Allah, that will give you inner peace and direct you to the right path & track to deal with BD.

Link to Bipolar Disorder Indonesia support group:
https://www.facebook.com/groups/355160295199/

Learn more about bipolar at Seribu Tujuan
Jennifer B.
Blog Contributor