For as long as she can remember, 30-year-old Ankona “Mo” Das has loved traveling. Traveling has provided a way to break out of her shell, to experience new landscapes, and to just see the world outside her window. But when recounting her travels to me, Mo remembered one uncomfortable moment that really stuck out:

“I was in Darjeeling and walking towards the cab after my hike. Someone began yelling at me, asking if I was drunk and why I didn’t walk faster. It was incredibly upsetting, and that’s one of the reasons I find it so important to raise awareness.”

You see, seven years ago, Mo was diagnosed with multiple sclerosis (MS), a rare and chronic central nervous system (CNS) disease. One of the hallmarks of MS is a loss of coordination or balance. But to Mo – and understandably so – these moments of misunderstanding or even frustration directed towards her can be hurtful. That’s one of the reasons why she is so passionate about raising awareness – to not only share her own experience with MS, but to raise awareness and cultivate understanding of invisible illnesses on a larger scale.

Recently, Mo and I sat down to discuss her experiences living with multiple sclerosis, the importance of raising invisible illness awareness in areas like India, and her advice for people who are newly diagnosed.

What is Multiple Sclerosis (MS)?

Multiple sclerosis (MS) is a chronic disease which affects the brain, spinal cord, and optic nerves. It occurs when a person’s immune system begins to attack the myelin sheath, or the protective covering of nerve cells. The resulting nerve damage then disrupts communication between the brain and the body. Altogether, there are two forms of MS: relapsing and remitting, or progressive. Those with relapsing and remitting MS experience periods of remission between symptomatic episodes; those with progressive MS, alternately, experience disease progression without remission.

An estimated 2.3 million people in the world have multiple sclerosis – though misdiagnosis can be common. MS is a variable disease; signs, symptoms, and severity vary widely among those affected. While multiple sclerosis can occur at any age, it is most common in those between ages 20-40. It is 2-3x more common in women than in men.

For Mo, her symptoms have included:

“Occasional numbness, which I thought was fine and doable until I realized that it’s here to stay. Tremors have been my latest symptom. I very recently discovered certain breathing routines that can help me get out of frequent tremors, which was nice since my doctors didn’t tell me how to cope with it. It’s very difficult to fall asleep also, even though I’m very fatigued. I just want to close my eyes and hope the world will switch off for a while.”

Other symptoms and characteristics can (but do not always) include:

• Limb numbness or weakness that often occurs on one side of the body at a time
• Unsteady gait and/or lack of coordination
• Slurred speech
• Fatigue
• Dizziness
• Tremors
• Vision loss – often in one eye at a time
• Lhermitte sign (electric-shock sensations when moving the neck in certain ways)
• Eye pain
• Prolonged double vision
• Blurred vision
• Problems with bladder, bowel, or sexual function

Mo’s Story

Growing up, Mo was always drawn to dancing. It lit her heart on fire; she never felt more like herself than she did on stage. Even now, she describes herself as a dancer in her heart and soul. But she experienced some difficulties in the years before her multiple sclerosis diagnosis. As she described above, her symptoms started off with some occasional numbness. Then she began experiencing tremors. One time, when singing, she explains that people had to help her up from the sitting position because she almost fell.

Her symptoms became more present when out with her parents in Delhi. They were street shopping – something that Mo has always deeply enjoyed – when her parents noticed that she was limping with her right leg. Mo explains:

“My father and I were ignoring it because at the time, I was very active. So we figured that I must have pulled a muscle or something while trekking. But my mom thought that I might have fractured my leg or something, so we ended up going to see an orthopedist. We were really lucky that the orthopedist was so helpful. He knew right away that it wasn’t a bone problem and ended up sending us to a neurologist.”

The next day, Mo and her parents met with the neurologist in Delhi. Mo says:

“He was an angel in disguise. Right away, he said that he thought I might have multiple sclerosis and that we needed to do an MRI as soon as possible. It was a little scary because it turns out I didn’t realize I was claustrophobic. But the MRI, and the fact that the neurologist said I had a significant amount of lesions, finally helped me get a diagnosis.”

Life with Multiple Sclerosis

Originally, during the time when Mo was pursuing a diagnosis, she had also planned to visit Bombay with her friends. But the neurologist quickly told her that she should not go, as they needed to learn more about her health. Prior to her diagnosis, Mo had never really heard of multiple sclerosis before. She explains:

“I didn’t really know much about MS except that I had seen it in a movie before. There was a character who used a wheelchair. It was really unreal for me when the doctor told me that I was going to have to stop dancing and performing, and that I might one day have even more mobility problems. I had to give up dancing very unexpectedly. My life changed that day, not just to a different page but to a different chapter altogether. Seven years later, I can’t perform the steps with as much finesse as I used to and going on stage is out of the picture. But it was really devastating to learn.”

At first, however, Mo was trying not to let MS take over her life. Rather, she simply tried to deal with it as best as possible. But she quickly learned how widespread the lack of awareness in that area was. When she went to college, she explains that her teachers, professors, and friends were really worried. She says:

“One of my professors told me that one of her friends with MS had just died. That’s right. She told a newly diagnosed young adult that a friend of hers just died of the same condition. That was really shocking for me. I was also interning as an editor in a publishing house and my publisher told me to work from home after my diagnosis.”

Soon, Mo began experiencing severe anxiety and panic attacks related to her condition. She also struggled with the way people would approach the topic of multiple sclerosis with her. For example, she shares:

“The lack of understanding and awareness is one of the hardest things. It was, and still is, difficult to talk with friends. They keep saying that I’m fine, I look fine, but they don’t know that MS is an expensive disease in a developing nation, and I struggle walking straight or that I have difficulty completing work. They don’t understand it or try to acknowledge it, and neither do my parents. I can’t compromise and suddenly start being ‘good,’ it just doesn’t come naturally to me. MS has become a part of me. I can acknowledge my strengths but I want someone to listen to the fact that we need to acknowledge my weaknesses too.”

Join us in Part 2 of our interview, where Mo and I discuss treating multiple sclerosis, her advice for the newly diagnosed, and the importance of raising awareness — in India and beyond.