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Lived Experiences Of a Person With Multiple Sclerosis


In this story, the author explores the complications of living with a neurological disability in India. Through his experience he shares his tryst with accessibility and raises questions about inaccessible infrastructure. He further highlights the unique cultural aspects that structure an individual’s experience of living with a disability in India.

“You cannot create an experience, you must undergo it” 

-Albert Camus, Notebooks 1935-1942, 1963

My MS (Multiple Sclerosis) story began back in 1994, when I was 33. At the time, I was deep into a helping profession. Being a trained clinical psychologist with almost five years of experience, mainly working with people with disabilities, the first symptoms I experienced seemed like a joke. I started feeling occasional numbness and tingling in my legs, which made me see a neurologist. The brain scans back then didn’t show anything unusual. With no stiffness, spasms, incontinence complaints, or vision issues, yet, the persistent early symptoms made the neurologist suspect a psychological root to the problem. With a chuckle, he said, “You should consult a psychologist!” He knew my professional background quite well.

It wasn’t until more than ten years later that the quiet story sprung back to life and took a new form. That’s when the tingling sensations returned with a vengeance, accompanied by foot drop, difficulty walking, heaviness in the legs, muscle tremors, and fatigue. This time, a variety of neurological tests were done – right at my old university! When I was a student, there was a running joke at NIMHANS (National Institute of Mental Health and Neuro Sciences) in Bangalore. There was a busy road that separated the student areas from the hospital where patients with neurological and mental issues were treated. “We’re lucky to be on this side of the road,” we used to say. But now, after a decade of training, I thought sadly, “I’m crossing over to the other side of the road!”

When the news about my brain condition spread to my acquaintances, there were various reactions from those who weren’t well-informed. Some suggested that working with individuals with mental health challenges might have influenced me to develop similar issues. Luckily, my MS was the type that comes and goes, as they say. As I approached my 42nd year, I started experiencing difficulty lifting the front part of my foot, causing a noticeable dragging sound when I walked. Initially, I thought it might be due to my footwear, so I switched to lighter shoes. However, the dragging persisted. By this time, I had almost forgotten about the symptoms I had at 33.  A family doctor suggested seeking a neurologist’s opinion.

Once again, the initial MRI scans didn’t provide a clear picture. Contrast MRIs revealed small lesions in the spinal regions. I began a regimen of in-patient treatment involving steroids, neuromuscular relaxants, and calcium supplements. During this time, I experienced frequent trips and falls, especially on uneven surfaces. On one such occasion when I fell on the side of a road, some onlookers made scornful remarks, assuming I was drunk and should be disregarded. I had to adjust my pace of getting up and walking, to a slower and more controlled speed. These moments often reminded me of what Julius Caesar once said, “Experience is the teacher of all things.”

Climbing up and down stairs became a new challenge that I had to relearn. I had to change my previous habit of casually ambling or jumping across two or three steps at once. Just climbing a single step became difficult.

The nosing on stairs, no matter their design, presented the biggest risk while climbing. My shoe would often hit against the edge, causing me to fall, thankfully only from the last couple of steps. If it had been from the top, it could have resulted in a serious orthopedic injury. Rug-carpeted floors, stairs without handrails, or those adorned with flower pots on each side posed additional threats in many buildings.

This makes me think about accessibility, which is about how easy it is for people with disabilities to use buildings or facilities. Some time back, a group of us decided to check how accessible the public service building where we worked was for people with disabilities. We looked at things like ramps, handrails, elevators, toilets, water fountains, parking areas, entrances/exits, floors, signs, wheelchair movement, counter heights, lighting, seating, and more to see how easy they were for people with physical challenges to use. The results showed that the accessibility score of public service buildings was below thirty percent using a lenient standard and dropped to less than ten percent with a stricter standard (Venkatesan et al., 2012).

Meanwhile, I used public transport less. It was becoming harder to navigate the crowds and get on or off buses, trains, and auto-rickshaws without help. Even though people offered to assist me, I felt embarrassed to accept it. I would often say, “No, thank you! I can manage on my own!” even though it was quite tough for me. After a few more falls and accidents, my self-esteem and confidence took a hit. I started worrying about how long this would continue, where this would all lead, and if I would end up in a wheelchair or even bedridden.

Walking on the roads has decreased too. However, I still use a two-wheeler. Many people suggested that I switch from a four-geared kick-start vehicle to an auto-start push-button type. I had to keep the speed of the vehicle below 20 kilometers per hour and make sure my legs were close to the ground in case I needed to suddenly use the hand brakes. This became a new way of riding, whether alone or with a passenger. Despite all these precautions, there were still times when I lost balance and fell from the two-wheeler.

Bystanders and friends started offering unsolicited advice with good intentions. Some recommended trying a three-wheeler. Another person suggested exploring alternative healing methods like visiting a religious place or spiritual guru, or even starting a penance. They believed issues with the lower limbs could be due to a Sarpa Dosha, a curse from a snake god caused by an ancestor killing a snake either intentionally or unintentionally. The belief was that performing acts of penance or snake worship could remedy this affliction.

In the meantime, without my knowledge, people started referring to me as “lame” in a subtle and gradual manner. It wasn’t meant to be hurtful; it was just a way to easily identify me. This is a common cultural practice in India, where terms like “blind” for those with visual impairments, “deaf” for those hard of hearing, “mad” for mental illness, or “mental” for intellectual disabilities are used without negative intent. It’s a unique aspect of Indian culture where words may be spoken without negative feelings attached. For instance, someone might tease or insult a person with intellectual disabilities but also protect or even support them unknowingly.

In India, it’s common for people to show pity and offer advice of using walking sticks, visiting pilgrimage sites, or trying alternative therapies when they see someone dealing with a condition. I’ve had friends and acquaintances suggest various treatments such as foot nerve therapy, dietary supplements like almond or aloe vera juice, sensory therapies like massages or acupuncture, and many more. It’s hard to know which of these treatments are actually backed by evidence and effective. The internet is full of information that can overwhelm you with different perspectives on managing multiple sclerosis.

As my balance and reflexes declined, and I started falling more often, my social activities and outings decreased. Eating out became a challenge as I had to be mindful of table manners and cutlery etiquette, fearing I might spill food. Spicy foods upset my stomach quickly, leading to embarrassing situations. Dressing myself became a daily concern, requiring assistance with buttons, knots, laces, and zips. When invited to events, my first instinct was to decline, making excuses of being busy or already committed elsewhere. Some understood, while others thought I was just being vain. It was hard to explain my struggles to everyone. Failing to perform simple daily tasks shattered my self-confidence, leaving me feeling ashamed and unsure. In the end, perhaps Paulo Coelho was right when he said, “People never learn anything by being told, they have to find out for themselves.” Paulo Coelho, in Veronika Decides to Die (1998). 

To wrap this up, let’s talk about the weird body sensations in MS. Picture this: tingling, itching, pinpricks, electric shocks, burning, prickling, twitching, numbness, and even feet feeling like they’re wet—it’s like a whole circus going on in your body!

Sometimes it’s like a quick cameo appearance, other times it’s like they’re settling in for a long movie marathon, lasting from a few minutes to over an hour. These sensations are like surprise guests; they can show up uninvited anytime, anywhere. But the real party starts after a short two-hour snooze at bedtime, usually right around midnight. Imagine this: you’re peacefully dreaming, and suddenly you’re woken up by your leg throwing a tantrum, and then the other leg joins in. And the chaos spreads to your shoulders and beyond. You end up shuffling to a chair like you’re at a midnight dance party you didn’t sign up for.

To deal with these nighttime shenanigans, I’ve mastered the art of falling asleep while sitting up—talk about talent! I’ve even started chatting with my invisible buddy (aka myself), and counting these jerks like it’s a quirky game show. And just like magic (or maybe exhaustion), they disappeared as mysteriously as they arrived, leaving me without any jerky surprises.

So, in the end, having a little chat with yourself can be quite an entertaining mind game. Who knew dealing with body sensations could be this amusing? 


Al Sharman, A., Khalil, H., Nazzal, M., Al Sheyab, N., Alghwiri, A.,  El Salem, K., & AlDughmi, M. (2018). Living with multiple sclerosis: a  Jordanian perspective. Physiotherapy Research International, 23(2),  e1709. 

Borkoles, E., Nicholls, A. R., Bell, K., Butterly, R., & Polman, R. C. (2008).  The lived experiences of people diagnosed with multiple sclerosis to  exercise. Psychology and Health, 23(4), 427-441. 

Haubrick, K. K., Campbell, S. E., Young, J., Tingting Zhang, M. D., & Rizvi, S.  A. (2021). The Lived Experiences of Adults with Multiple Sclerosis. Rhode  Island Medical Journal, 104(6), 38-42. 

Miller, C. M. (1997). The lived experience of relapsing multiple sclerosis: A  phenomenological study. Journal of Neuroscience Nursing, 29(5), 294- 305. 

Olsson, M., Lexell, J., & Söderberg, S. (2008). The meaning of women’s  experiences of living with multiple sclerosis. Health care for Women  International, 29(4), 416-430. 

Venkatesan, S., Jayakaran, G.T., Purusotham, P., & Rafi, M. (2012). Disability  access audit of public service facilities. Journal of All India Institute of  Speech and Hearing. 31: 190-201.   

S. Venkatesan

S. Venkatesan is a clinical psychologist who has served as Dean (Research Development), Professor & Head, Department of Clinical Psychology, All India Institute of Speech and Hearing, Mysore, Karnataka, India since 1998. Before that he was a faculty member at the NIEPID, Secunderabad for nearly 15 years. He specializes in diagnostic and therapeutic interventions for children, adolescents, adults with disabilities as well as their families and caregivers.  He has taught postgraduate students and guided scholars pursuing doctoral studies in the fields of speech, language, hearing, special education, and clinical psychology. Here he shares his experience of living with a neurological condition.



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