Thirty-one year-old Sharifah Syed Munshe grew up in Iran but moved to Malaysia for university and never left. She works in the Department of Business Development at the gas and oil company, Petronas. She lives with her husband and daughter in a bustling suburb just 20 minutes from the city centre. Here she talks about her diagnosis, juggling treatment with planning a family, the complexities of funding treatment and her ambition.
When we first heard that I had MS we had no idea what it was. The specialist just said: ‘it’s a critical illness and you are autoimmune’. I was diagnosed at a private clinic and when I was discharged I was told to talk to another doctor in another hospital about medication. Number one I felt it was a hassle, and number two he told me if I’m on the medication it will affect my reproduction. That was the year I was getting married so that scared me. So I heard him, but I ignored it.
My parents are fully supportive now but at the time their response was ‘no, it’s nothing, maybe someone did it to you’. Asian culture believes in bad omens and if you look fine you are fine. After I got out of hospital I felt much better. I felt 100% already. I could walk, I felt good, I didn’t feel lethargic. I was a little ignorant at that time. I was in denial.
My second relapse was during the Covid lockdown. By that time I was married and we had our daughter. At that time I felt numb. I thought, ‘oh probably I should work out a little bit’ and I did my workouts but that prolonged for a few days. You know how when you sit for too long you feel a little numb and then it goes away? This one stayed for days.
This time I was lucky to be advised by another doctor, Doctor Shanthi, and she comforted me that actually there are a range of medications that you can take that are not hard on your body, even if you want a family. It’s very important to be advised properly. If I didn’t have that I would Google for sure! That first doctor wasn’t as knowledgeable, or maybe at that time medication wasn’t as friendly, I’m not too sure, but it was really scary being told medication would affect pregnancy. Having a doctor who says ‘sure it’s a critical illness but you can live with it and you can adjust your medication’ is reassuring.
The medication I am on is interferon-beta and it’s a self-injection three times a week. It costs about RM5000 ($1,130) for a one-month supply. It’s about a third of my salary so a hefty amount to spend. At the moment I am managing the payments and my parents help me if I am tight for a month, but it is always in the back of my mind.
Tabung Bantuan Perubatan is the fund that the government sets for people with critical illnesses to apply for relief on their medication costs, but they only allow each person to apply twice. There’s another type of government relief where you will be on a constant medication supply, but that one is on a first come first served basis. I am looking into that. I’ve also applied for Zakat which is a fund for Muslims, but friends have told me it takes a long time to hear from Zakat.
I am lucky to have a safety net with Petronas who I work for as they have coverage if you have a critical illness. It works on a pay and claim basis. They will refund the full amount until you max out your insurance allowance. I have done my calculations and a whole year of pay and claim allowance will cover my medication, but it will hurt me if I have to be admitted as I cannot also then claim my hospital bills. That’s why I’m hoping I get relief from outside for medication costs so that I can keep some of my company allowance in case I am admitted.
I am very much living with MS. I am trying to keep myself stress-free because I think that triggers relapses. I want to be this whole independent woman and take up roles in the company and harder tasks, but I’m scared of how it might affect me. I’m trying to weigh that up at the moment. I want to excel but it comes with some level of stress. But I don’t want to be in a comfort zone either. I want to level up.
I actually want to be in a more corporate kind of role in which you would be married to your job a bit more. That excites me. You’re looking at opportunities at buying and selling companies, and companies like Petronas, they work late hours you know. Being in the corporate world, it’s a very competitive kind of style, but I think we are shifting away from the ‘longer hours you stay the better you are’ mentality.
I do want to work because number one that helps keep up with my health care supply, but also number two just to be ambitious! I think: ‘You’re still 30, you can’t be bogged down with MS like you can’t do anything, you can’t be so stressed, there’s more that you can do!’
With thanks to the MS Society of Malaysia for connecting us with Sharifah.