We are three girls with Multiple Sclerosis (MS) from the same batch of the same school. I have a friend who has been living with MS for 20 years and another who has had it for more than a decade. My good friend’s relative was diagnosed with MS recently. Even the wife of Manish Sisodia (former Deputy Chief Minister of Delhi) has Multiple Sclerosis.
Despite knowing so many people within my circle who have MS, I still see that there is very little awareness about this condition. We’ve all heard of illnesses like Cancer, Alzheimer’s, Parkinson’s among other conditions. We instantly grasp the seriousness of the condition the moment we hear these names. We start treatment without delay, change our diet, adjust our lifestyle and do everything we can to get better or at least stay stable.
When you hear the words Multiple Sclerosis, it doesn’t immediately tell you what’s happening to your body. MS is an autoimmune neurodegenerative disorder. Autoimmune, neurodegenerative- two very heavy, complex terms. They’re not words we use in everyday conversations. Doctors rarely have the time to explain things in the depth you would like, and most people around you have never even heard of it. There is no strong support system, not many organisations or influential voices to help people truly understand the gravity of MS.
Why isn’t there enough awareness around Multiple Sclerosis?
Despite people around us living with this disease for decades, there is still very little understanding of MS. I have been living with MS for six years now, yet I still find it difficult to explain to people what it truly is. More often than not, I see them making their own assumptions about my condition.
It’s true that MS cases are now increasing in India. Maybe earlier the numbers weren’t as visible because the right tools for diagnosis weren’t available. But one thing is certain, the rate at which MS cases are rising is far higher than the rate at which awareness is spreading.
This lack of awareness around MS delays timely diagnosis and proper treatment. MS patients often struggle to have their condition understood by others, which leads to difficulties in different aspects of life, especially at the workplace.
Ensure you are insured in MS
While this applies to many illnesses, for MS in particular, financial independence becomes absolutely critical. Most treatments are costly, and being financially independent can make a huge difference in how one manages the condition.
Before I talk more about work, I want to emphasise something extremely important: Health Insurance. And when I say this, I’m not just talking to people with MS, I’m talking to everyone. Please, make sure you have a proper health insurance.
Corporate insurance is never enough. The moment you lose your job, which often happens when you lose your health, you also lose your corporate coverage. That is why you need personal health insurance that stays with you no matter what.
I’ve spoken to so many friends and relatives who hesitate to spend money on premiums every year because they think, “Why should I pay when I’m healthy? I won’t be diagnosed with anything serious.” And that’s true for all of us. Like Matthew Perry says in the very first chapter of his book, you never think something bad can happen to you, until it does. I’m not trying to scare you; I’m only asking you to be prepared for the unforeseen. That’s why we need to stay prepared. That sense of security, just knowing that at least your finances won’t become a problem if something as serious as MS happens, takes a huge part of the burden off your shoulders.
Getting back to the issue of knowledge gap, when you tell most people that you have MS, the usual reaction is a blank face. And those who do want to know more often turn to the internet. But the problem is, when you search about MS online, what you usually find are the harshest descriptions, the worst case scenarios. This lack of awareness often leads to stigma. I know someone who once overheard her colleagues doubting her ability to handle certain tasks just because she has MS. I know someone else who felt forced to leave her job because of it.
These situations point to a pressing need for empathy, understanding, and honest conversations around MS. The first few things you see online when you type in MS are terms like “invisible disability” and “no cure for MS.” That ends up creating more fear and judgment, instead of understanding and support.
The word disability itself creates a lot of misunderstanding. Most people immediately think of visible mobility challenges, but that’s not always the case. MS is called an invisible disability because symptoms like fatigue, brain fog may not be visible externally.
And while it’s true that there’s currently no cure for MS, that doesn’t mean there’s no hope. Doctors and researchers are working tirelessly towards a cure, and today, we already have excellent treatments available that allow people to live active, fulfilling lives. With timely diagnosis, the right medication, and proper guidance, people with MS can absolutely lead normal, balanced lives.
Building support to combat stigma
This is where we all have to come together. Professional organisations need to start offering opportunities to people with MS. Even small changes can make a huge difference, like creating reasonable adjustments for employees who may be struggling with certain symptoms.
When I talk about professional organisations, I’m not referring to just any workplace. I’m talking about the same organisations where people with MS have chosen to build their careers. I don’t mean the jobs that are “given” to MS patients out of assumption, as if they can only handle a limited set of roles. I’m talking about the jobs they have worked hard for, the roles they have chosen for themselves, and yet are not taken seriously, simply because they have MS.
If someone is committed and doing good work, then why not give them a chance? Why not make adjustments so they can continue to contribute in the ways they are able to?
The last thing we want society to believe is that a diagnosis of MS automatically means the end of a person’s career. This mindset needs to change. It will only change when organisations step forward with empathy and flexibility.
Businesses cannot truly achieve their goals without fostering an inclusive society and workplace. When we talk about diversity and inclusion, it’s easy to focus on visible aspects, different geographical locations, caste, gender and languages. But diversity goes beyond what we can see. It also means recognising and accommodating people with invisible conditions. We can create a prosperous society only when we tap into this often overlooked talent pool, unlocking the potential of a hidden market that holds immense value.
I also feel that we, as MS patients, carry a part of the responsibility for this lack of awareness. Many of us choose to remain silent about our condition, often because society doesn’t know how to respond or accept it. But if some of us can begin to speak openly, it could change so much. By sharing our experiences, we can help others recognise the early signs of MS and seek timely treatment.
Living with MS should not be a taboo or something whispered about in fear. It should be spoken of as openly as someone saying, “I have BP” or “I have diabetes.” The more we normalise these conversations, the more we build understanding, acceptance, and strength as a community.
We need stronger, large scale campaigns dedicated to Multiple Sclerosis. We need doctors to talk about it more openly. We need the media to cover it more widely. And above all, we need patients themselves to share their journeys, their symptoms, the turning points that led them to seek help, and their experiences, so that more people can recognise the signs early and get timely diagnosis.
Isha Gupta is a media and communications professional who worked as a journalist covering health stories. After living with Multiple Sclerosis for the past six years, she now brings a more personal perspective to health narratives and is dedicated to telling these stories differently