Don’t forget to check out Part 1, where we discussed what multiple sclerosis (MS) is, went over Mo’s diagnostic journey, and began talking about the importance of awareness.
Treating Multiple Sclerosis
When it came to treatment options, Mo has tried a few different therapies. After college, she moved in with her parents in Delhi. At the time, she had started with an injectable treatment, i.e. glatiramer acetate, and had to inject herself every day.
After 2.5 years, she had moved off of the injectable treatment and was delighted about it. Lately she is using Dyfera 240mg, an oral pill created for the treatment of MS, and is always seeking out effective treatment options with her doctors. Mo also believes in the importance of exercise.
Raising Awareness – in India and Beyond
In 2018, the World Economic Forum published an article entitled “It’s time for India to wake up to invisible disabilities.” In the article, author Harsh Songra explains that a huge stigma around illness and disability exists in India. Even more so, the Indian infrastructure is not set up to be able to best provide for these individuals.
During our interview, Mo touched on this point a lot, explaining that there is still a long way to go for disability and illness acceptance within Indian society. Although multiple sclerosis was added as a disability in the Indian Constitution in 2016, there is still a wider lack of awareness. Mo shares:
“In India, we are far behind when it comes to talking about MS or dealing with people who have MS. People don’t want to accept me as having this disease. One time, someone from college asked what it was I injected myself with everyday, in a very rude manner – but to me, that signified how unknown the disease was and still is in India to teenagers, young people, and more. People don’t understand, especially when someone apparently looks ‘normal.’ They don’t want to talk about illnesses at all, much less invisible illnesses. It can be so lonely and that’s why I want to raise awareness. We need to talk about multiple sclerosis and other illnesses from different perspectives.”
Outside of sharing her story on Patient Worthy, Mo works to raise awareness through her social media. She created a handle on Instagram so that she could talk openly about life with multiple sclerosis, empathize with others, create connections and rant. Her platform is unfiltered, discussing everything from ways to ground herself, MS symptoms, and stress to the difficulties of sex and dating with a rare disease. In the end, Mo says:
“I’m just trying to find ways to ground myself because MS gave me none.”
Final Words and Advice
Since receiving her diagnosis, Mo is doing all that she can do to raise awareness, advocate for herself, and build a life she is happy with. She encourages others to do what they can to reduce stress for themselves. In her case, one thing that helped was volunteering as an English tutor for a 13-year-old child who was HIV-positive. She explains:
“It made me happy that I could still do things and connect with other people. My student has HIV through no fault of his own and I have MS with no fault of my own. I really connected with him and I’m so happy that he was adopted abroad.”
She also encourages people to consider a job that works with their condition and their symptoms. For example, she shares:
“You have to have a paradigm shift. If your specialty is editing, then look for alternative career options like content writing. I have always been an editor and copywriter, but now I struggle with comprehension and concentration, so I’ve looked towards maybe teaching or tutoring. You have to do what you can work with.”
Finally, Mo encourages other people to not only research their symptoms – but to be open with their doctors. Doctors should be more open to learning about patients, symptoms, and research, she says. Even if some people may not experience certain symptoms or progression, they should learn that it could happen. Staying informed is crucial.
