Mrs Sheela Chitnis is one of founder members of MSSI (Multiple Sclerosis Society of India) and has been an integral part in spreading awareness and helping people with multiple sclerosis (MS) in India from 33 years. But 33 years back, she was an ordinary housewife, whose life was all about taking care fo her family and doing household chores. However, today, Sheela Chitnis is a known name in the world of MS due to MSSI. So what has made her take up this cause? How was her journey from an ordinary housewife constricted to four walls to reaching out to people with MS and why she is an inspiration to every Indian woman? Mrs Sheela Citnis opens up about her life, journey with MSSI, future plans and everything in this tell-a-tale interview.
What made you take up the cause of MS?
Frankly speaking, I never thought of doing this kind of social work. I would have been an ordinary housewife but because my husband had MS, which was not diagnosed till 14 years after our marriage. It was not a smooth ride as I had to face challenges every day. One of the first symptoms that my husband suffered from was double vision. However, the visit to ophthalmologist revealed vitamin deficiency. The condition didn’t improve but worsened as he started showing other symptoms such as stumbling while walking (people used to ask me — tumhara husband din me pe bhi peeta he kya) and unusual fatigue. It is this thing about MS that I was transformed from a housewife to a bread earner to a social worker. (Read: Multiple sclerosis striking youngsters in India)
What has being your journey in serving people with MS?
It was not a smooth sailing one, as unlike diabetes and cancer; MS was not quite common. Moreover, there was no proper awareness about MS as it is believed that people living near polar regions are more prone it. To provide proper support for people with MS, the only way was to get them together and help them deal with it. For this, we needed a community or society for people with MS. This was when Dr Noshir Wadia and Mrs Rehmut S. Fazalbhoy played a key role in setting up MSSI. And finally, MSSI was established on July 26, 1985, and registered with the constitution. The society had only 3 patients (my husband was one of those MS patients) when it started. Currently, there are around 4000 MS persons (not patients as Mrs Sheela says) across India that are registered with MSSI. My journey at MSSI is a journey of memories because they have a bearing on MSSI’s achievements of the past 32 years, where I have been fortunate to have had a unique opportunity to interact with distinguished dignitaries from national & global platforms. It was from 1992, I have been actively involved in promoting and supporting MSSI.
Who has inspired you to do this?
Mrs Rehmut S. Fazalbhoy, she was the one who inspired me, guided me and helped me in spreading awareness about MS and implementing MSSI. It is only because of her that I could accomplish my mission in life. Mrs Rehmut S. Fazalbhoy was a social worker and used to serve blind people. Although only a few people suffered MS at that time, even they need an organisation to support people with MS.
Why a social worker for MS people?
MS takes a lot of toll on the caregiver and the family than the person. There were times when I used to feel frustrated and think why to live with this man. However, once MS was diagnosed, I knew no one would look after him. At this time, someone suggested me to go to British Council Library and read up about it. That’s when I realised his behaviour, mood swings and went to know more about MS symptoms. It was then I decided to dedicate my life to MS people and help their family understand and support then emotionally and financially. (Read: Get inspired: The girl who doesn’t stop running despite suffering from multiple sclerosis)
Tell you something about MSSI and its initiatives
When my husband suffered from MS, we didn’t know for 14 years what was wrong with my husband. It took around 14 years for us to diagnose the condition. However, the current scenario is not the same with the advent fo MRI scans and blood tests. Also, with physiotherapy, drugs and exercise, MS can be managed, and the life can be improved. MS is not contagious, not hereditary (no research studies have been reported) and it is rarely fatal as the symptoms can be managed with drugs and exercises. Hence, it is important to spread awareness about MS to help general people know about MS.
However, many people are not aware that there is a helping hand for people with MS. Multiple Sclerosis Society Of India (MSSI) is the only Charitable Organisation in India working for the welfare of MS patients (MSPs ) that focusses on fulfilling every need of MS people.
Many families wrongly consider it as a social stigma & do not disclose it to anyone. Also, most people with MS do not approach neurologists but consult GPs, orthopaedic doctors, ophthalmologists, etc who may not recognise MS, which remains undiagnosed for a long time. We at MSSI, help them diagnose, treat and manage the condition. MSSI tries to identify cases and provides them various medical and rehabilitation services. Our aim is to create awareness among the public and in the medical fraternity about MS & MSSI, its repercussions on the patient, family and community and help them live happier and fuller lives in spite of their illness.
Some of the services provided by MSSI include free drugs, home visits, physiotherapy sessions, free mobility aids, medical reimbursements, annual medical camps, conducting seminar and workshops. Moreover, we also make MS people financially independent & self-reliant by helping them learn computers, providing sewing machine, teaching handicrafts, to name a few.
What are your future plans?
Recently, MS has been included in the Disability Act so that certificates for benefits by the Indian Government could be provided to all MS patients without considering the degree of their disability. The next on the list is the need for taxes to be minimised on MS drugs. Also, we plan to intensify our approach by creating barrier free environment at public places. We also plan to spread awareness about MS at a greater level so that at least one member of a family know about it. However, for this, we need volunteers who can not only intensify the reach but also help in identifying MS people all around the nation and provide then support.
What is your advice to women on Women’s day?
As women, we must recognise our strengths because women are beautiful and strong and capable of doing whatever they believe. Believe in yourselves, and you can do it. However, I have a small request to everyone women reading this story. I want every woman to know about MS (you can visit MSSI website) and spread awareness about it by sharing this little information with at least one member of your family, relation, society or workplace. (Read: The inspiring story of Natasha Diddee aka The Gutless Foodie’s rare health condition is shocking, and what caused it is unbelievable).
Image Source: Sheela Chitnis/MSSI