Tenzin Choezom is a Tibetan refugee woman born in exile. Her life has so far oscillated between the borders of India and Nepal. She is also a graduate from Ashoka University and has a Postgraduate Diploma in Advanced Studies and Research (Adv. Major in Sociology and Anthropology). She has had a fair share of experience suffering from tinnitus for almost ten years and Meniere’s disease for the last four years. It has always been an endeavor from her end to spread awareness about the disease and create a more empathetic world for everyone.
Tell us more about the problem you are facing.
The prospect of suffering from meniere’s disease is not just physically debilitating but it rots your mental composure as well over the time. It is an everyday inner battle as an individual. But it gets isolating when that battle is not understood within the larger social setting. Unlike the people suffering from cancer which is very obvious, meniere’s disease on the other hand is a chronic invisible illness. A person with meniere’s hardly has any external visible symptoms and everything might seem normal except for the moment when the attack happens which can come at any point in time and is always uncertain. Imagine giving a presentation and you suddenly have a meniere’s attack. You are fully conscious but you have no control over yourself. You are literally spinning, losing your balance, feeling vulnerable in front of others and helpless with constant vomiting(if the dizziness gets intense) and tinnitus (ringing in the ear) which is there 24/7. Oftentimes, as a victim, instead of expecting people to understand what you are going through, you have to first deal with explaining your condition. This is a repetitive reality and it can get daunting because of the massive gap in knowledge of the disease within the community and the larger South Asian context. It is truly disheartening when people hardly acknowledge the existence of the disease as a debilitating condition of the inner ear and straight up say that it is just a mental condition when I try to bridge the gap.
When did your issue get diagnosed?
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It was during the summer of 2018. I was all ready to kickstart the summer semester at Ashoka University. But the table turned when I started having consecutive dizziness for a few seconds in the morning every time before my 8:30 class. I was fully conscious when the dizziness happened but I had no control over my balance. My friends would often laugh at me respectfully and say that I was using this as an excuse to not attend the morning class.Whatever they said did not bother me because I was naughty in that way. I was a sleepy head in the first place and would do anything to even get an extra five minutes of sleep. In between the moments of labeling it as an excuse to not attending the morning classes to potentially thinking that I was weak to knowing that my blood pressure level was low, the school infirmary nurses gave me ORS (Oral Rehydration Salts) to drink. I drank it for the first few days but no change. Finally, I decided to visit the doctor at the school infirmary who turned out to be an ENT specialist. I owe a lot to Dr. Priyanka and everyone involved at university for always giving me immense support. When I told her about the incident and my past experiences with tinnitus only after she asked, she referred me to a bigger hospital. I went through different tests (P.T.A, MRI Brain, CBC ESR, S.VirB12, T3T4TSH) and that’s how I was diagnosed with Meniere’s disease.
What is the cure?
There is no cure or scientifically proven treatment till date but there are different measures that would help control/alleviate the symptoms. There are different medications, therapies that one can look at and it can vary for different people but as for me, maintaining a salt/caffeine diet really helps.
How are you helping other people who have the same issue?
I have always feared being vulnerable in front of others and being judged because of my illness. It has taken me a while to come to terms with it and accept it as it is. It is a part of me that will remain with me forever. But I have turned this into a purpose to make sure that no one has to suffer silently because of the gap in the knowledge. I hope that my story helps each one of you who are suffering out there to be courageous and open up a conversation with your loved ones and as envisioned, this is a start to bringing more awareness about the disease, empathizing with the individuals, finding the treatment for it scientifically and thriving together as a community for a better tomorrow.
What has helped you to cope with the struggles you are experiencing?
When you see everyone around you enjoying to the fullest, you do not even dare to ruin the moment by having a sudden attack. I had the hardest time accepting this and hence, avoided a lot of social gatherings. But trust me, people are more generous and kinder than you think. So, try a little every day to move past your fear and do what you have always wanted to do. The attack might or might not happen. There is a 50-50 chance. Do not let the uncertainty of attack define your life. Let it come when it wants to come and you will handle it gracefully. It is definitely nerve-racking and it might take a while for you to recover from the trauma of having an attack but you will see a brighter you at the end. It has been a work in progress for me everyday to get better with it. Seek therapy if you have the option to do it, talk to your friends and family, get your frustrations out and cry if you want to, have a balanced salt diet but most importantly, be there for yourself every step of the way. Because you can only understand the magnitude of what you have gone through. And do not ever lose your hope even when it feels difficult. I have made this far and I believe you can too. Besides that, reading really helped and has been so therapeutic for me. I would suggest you read ‘In Love with the World: A Monk’s Journey Through the Bardos of Living and Dying’ by Yongey Mingyur Rinpoche la. It has been a savior for me for the longest time and I still go back to it when I feel anxious.
Anything else you want to share?
To those who are suffering out there like me, I see you and can empathize with you fully. I know that it sucks to the core to always be positive when the disease drains your mental and physical energy but life goes on. Living with the fear of attack is the worst thing you are doing to yourself. I know this fact but it is still taking me a while to get over it. But I hope we can outgrow the fear of attack one day and truly live everyday to the best of our ability. I am always here if you need someone to talk to and let’s together create a better world to live for everyone. You can always write to me at tenzin.choezom[at]alumni.ashoka.edu.in Also, thank you to Vidhi for amplifying my story of struggle with Meniere’s and giving a hope to thrive for everyone.