Chanchal Verma, a 26 year old from Pune, currently studying at IIM Bangalore talks of the challenges of diagnosis of Sjogren's Syndrome since she had uncommon symptoms starting from when she was just 14 years old. She has also been living with hearing impairment for the last few years. But she continues to strive for normalcy in her life with unstinting support from her family.
I am Chanchal Verma, born and brought up in Amravati, Maharashtra. I am a semi qualified CA having 18+ months of work experience. At present, I am pursuing Post Graduate Program at IIM Bangalore.
Please tell us a bit about your condition – when were you diagnosed, the symptoms, the time it take to seek medical help
I am suffering from an autoimmune disorder since I was 14. Since it was not treated on time, it damaged some of the nerves connecting to the brain which caused hearing impairment and movement disorder. It took almost 11 years to find out the actual cause and to get correct treatment.
Can you talk a little bit of the initial symptoms, challenges of getting the right diagnosis
In the beginning, I had balance issues while walking. I consulted a neurologist and based on MRI and tests, he diagnosed Vit B12 deficiency. I was prescribed Folic acid and Vitamin B12 injections which was initially every day, then twice a week and later once a month.
There was also pain in neck and legs. Between the ages 14 and 20 I used to get exhausted very soon.
After 2 years I got better. I stopped taking injections and medicines completely, but then after 5/6 months, the symptoms started again. I had to do an MRI again and the doctor prescribed the same medicines again.
As regards the hearing issues, the ENT doctor said that it is not related to ears. I consulted many neurologists. In 2021, a neurologist in Hyderabad suspected Sjogren’s. I was prescribed high dose steroids. This was my worst period. I would sleep a lot, anytime/ anywhere. I gained a lot of weight.
I consulted a rheumatologist in Hyderabad who asked the prescription to be changed. After a discussion between both of them, they changed medications.
However, it was not possible to visit doctor in Hyderabad every now and then so I consulted one rheumatologist in Nagpur itself since Nagpur was not so far from my hometown Amravati. However, the medications did not work at all. There was no improvement.
Later, I shifted to Pune with my family. I started having vision issues and light sensitivity. I consulted one rheumatologist in Pune itself. He understood my issues in the first meeting itself. He prescribed few medicines and asked me to undergo Rituximab therapy once in every 6 months. This actually helped me a lot in improving my conditions a bit, Till now I have already undergone Rituximab therapy thrice.
Did you know about Sjogren’s disease prior to your diagnosis? How did you react to the diagnosis?
I had never heard of Sjogren’s before I got to know that I am suffering from the same. When I got to know about it I tried to read about it on the internet and tried to get well aware of it.
Please describe your experience of managing symptoms of Sjogren’s, The interventions tried, did they work, effects, complications
I am on medications to reduce the effect of Sjogren’s. I undergo Rituximab therapy every 6 months as suggested by my doctor.
Are your balance issues under control?
No, but it’s not as bad as it was earlier. A little bit better than before.
How have you coped with the loss of hearing? What assistive devices have you used to be independent?
It was really difficult at first since I had a normal life for almost 22 years. Gradually, I tried to get used to it. I can’t use hearing aids since the hearing loss is due to nerve damage and it has no connection to ear canals. I use speech to text software to communicate with others and I always prefer texting over calls.
What has been worse – managing Sjogren’s or dealing with the loss of hearing?
Dealing with the loss of hearing has been much harder. It was a very crucial time of my career. I have always chosen my career over everything else and I had to cope with the hearing loss so yeah it was indeed worse than managing Sjogren’s.
How does the hearing loss affect your management of your health – interactions with the healthcare community.?
Every time I visit my doctor, someone accompanies me – typically my mom or my dad. The doctors talk to them. I only explain my issues.
You are currently in a management institute. How was the process of selection? How did you handle GD and interview process?
I had to appear for entrance exam called CAT after that I got an interview calls from IIM ABCKLI and other IIMs. During the interview process I just requested the panel to write questions on paper since I am hearing impaired. So it was a relatively smooth process.
How do you handle academics?
I have been excellent in academics since the very beginning. So, it’s not that difficult for me but whenever I face any difficulties, I have good professors here to reach out. Everyone is very helpful.
How do you handle the lectures? Or project work?
Mostly I use speech to text software or I study everything on my own as lectures are not very helpful in my case.
I am trying to learn to read lips but group discussions are still a challenge. I avoid conversing with anyone because it is very difficult. I end up assuming some stuff.
How has Sjogren’s and hearing loss affected your lifestyle, work life, personal choices. How has this changed your life perspectives and ambitions?
During the articleship in client’s place or audit, it is very difficult to communicate. I am now getting used to it.
When my CA exams were postponed, I gave an interview for Deloitte and joined Deloitte. All the seniors were MBA graduates. Seeing them lead a team/ leading a project, I wanted to be like them. So I sat for CAT exam.
Becoming a CA is still my first priority. I still plan to do this.
I did not let my conditions affect my ambitions and perspectives at all. Technology is a blessing – it helps but only we know how we have to cope with it.
Support of people can be a big help. My older sister and younger brother have been very supportive. My parents are the best, they went out of the way to try and make things better for me, tried everything, asked so many people for suggestions.
We even tried black magic .. desperate times made us try desperate measures…
Do people around you understand your constraints? How do you explain it to them?
Yes, everyone I have met till now has been really helpful and supportive. I just ask them to speak slowly so that I can understand the speech.
Did you look for help online? Did you find support groups?
No, I never tried.
Did you interact with Sjogrens India?
Doctor did not explain much about Sjogren’s. So I searched online. Found Sjogrens India online and I am part of the group now. It has been very helpful.
Why do you choose to write about your experience?
I feel if there are other people like me who are facing the same issues as of mine, this will kind of help them to know that they are not less worthy than anyone else. I will be more than happy if my story and experience helps in inspiring them even a bit.
Looking back – is there anything that you would do differently? What is your advice to people in your situation
The only thing I want to say – Just believe in yourself and you will be able to achieve everything you wish for. I have never let my condition affect my ambitions. My aim, my goals were, are and will always be my first priority. I understand it will be a bit more difficult for me as compared to others to achieve them but nothing is impossible. If you work hard for it nothing can stop you from getting it.
Complete the sentence
My motto in life: I want to make my parents proud.
I was inspired by: My father.
The strangest comment/reaction I received:
The funniest moment was:
The most annoying moment: When I really want to have a normal life like others, but I can’t.
The best thing someone said: I am a really kind and empathetic person
I love: My Family
I hate: I believe hate is a very strong emotion and one should not hate anyone or anything no matter what the reason is
I fear: Failure
My biggest support: My parents. Whatever I am today is only because of them. I have made them suffer a lot because of my illness
The best gift I received : My family.
My favourite entertainment: Netflix with subtitles
