Multiple Sclerosis: “I am a warrior, and I will overcome this illness with love and positivity.”

Hello, Surjeet! Thank you so much for agreeing to share your story with the Carenity audience.

First of all, could you tell us more about yourself ?

Hi! Thank you for inviting me to share my story. I am Surjeet Kaur from India. For the past 11 years, I've been deeply involved in advocating for Multiple Sclerosis (MS) awareness, a commitment that began when I was diagnosed with the condition myself. Alongside my profession in marketing, I hold certification as a Yoga instructor. Transitioning away from my corporate career, I've dedicated myself to raising awareness about MS and educating individuals about the benefits of Yoga, particularly for those managing chronic illnesses. Beyond my advocacy work, I find joy in various forms of expression such as art, music, writing, and creating videos. And of course, nothing beats the simple pleasure of sharing a cup of tea with my loved ones.

When and how did you first notice your MS symptoms, and what led you to seek a diagnosis?

It was an ordinary day in November 2012, and I woke up with a stiff neck. I tried to brush this off thinking I had slept funny. This sensation then progressed down to the right side of my whole body with extreme touch sensitivity. I also started to experience a strange electric shock-like sensation throughout my body. Slowly my right side became so numb that I started limping and I couldn’t even eat food by myself.

After a month of visiting various doctors and many tests, I received a diagnosis of multiple sclerosis, and it changed my life forever. 

How has MS affected your daily life and routines? Could you discuss the physical and emotional challenges you face as a result of MS? Are there specific triggers or conditions that exacerbate your symptoms?

MS has been a life changing experience for me. It not only changed my lifestyle and ways of eating, drinking, sleeping etc., it also affected my social life, career, emotions, and daily life.

With MS I could not keep up with my social life. Therefore, not only did I have to reduce my meetings with friends but also limit my social circle. I couldn’t stand up to the responsibilities of keeping commitments and maintaining balance amidst my unpredictable health. Not everyone could understand why I was always feeling tired or why I was having pain.

In terms of my career, I had to give up on the corporate life as it was stressful for me, and I had two relapses due to office stress. Recognizing stress as a major trigger for MS exacerbations, I made the decision to transition into a career path that prioritized my health and allowed me to assist others. This led me to pursue formal training and international certification as a Yoga instructor.

MS also interferes with the quality of life making the daily small tasks like bathing, doing laundry, or cooking difficult. Because MS is an unpredictable disease, there is always a fear of the future. We are not sure about how we would feel tomorrow or even after a few hours. At one time, we are totally fine and the next moment we can be on bed rest.

Even minor changes in weather temperature can trigger MS flare-ups, limiting my enjoyment of seasons like summer and winter.

These overwhelming changes did affect me emotionally. From a free-spirited girl, I became a reserved person. From being carefree, I have become self-disciplined.

After all this, I must admit that MS has changed me and made me stronger than I ever knew. 

Can you describe your current treatment regimen and its effectiveness in managing your MS symptoms?

I adopt an integrated approach to managing MS, combining scientific and holistic methods. I use disease modifying therapies (DMT) alongside holistic practices like diet, exercise, lifestyle & mental health. I respect diverse treatments, recognizing individual differences, all aimed at helping patients.

My personal experience with diet adjustments, physical rehabilitation through yoga and incorporating daily movement routines highlights the importance of personalized health strategies in managing my MS symptoms.

These are not only beneficial for physical health, but they play a very critical role in mental wellness as well. 

Has your perspective on life and your priorities changed since being diagnosed? How do you stay positive and maintain your emotional well-being while living with MS?

MS has made me understand that prioritizing self-health is crucial. Self-love & self-care is extremely important as it makes you take the time to do things that help you live well and improve both your physical health and mental health. This also helps manage stress and increase energy. I believe that even small acts of self-care in daily life can have a big impact.

It is not easy always, but I always try to see things from a positive perspective. I believe that I am a warrior, and I will overcome this illness with love and positivity. MS is unpredictable, but no matter how many times it tries to knock me down I will get up again and challenge it. I have MS, it doesn’t have me.

It is fine to feel sad or cry at times, after all we are humans. But the real warrior is the one who wipes those tears and stands tall again.

I am grateful to have a supportive family who stood by me during my diagnosis and is still so supportive and proud of me today, seeing how I have made this illness as my mission to spread awareness. Their unwavering support fuels my determination to transform my journey with MS into a mission of awareness and advocacy.

Having a strong support system, both within my family and the wider MS community, has made this journey more manageable and meaningful. 

What inspired you to start your own Instagram page and what do you post about? Was there a specific moment or realization that prompted this decision?

When I was diagnosed with MS, I barely had an inkling about what MS is.

I had lots of questions to ponder in my mind like, what about my future? Will I be able to walk properly? Will I die early? Will I be able to work? Will anyone marry me?

Despite the initial shock and numerous questions about my future, my family's unwavering support became my pillar of strength, and I embarked on a journey of awareness and positivity.

I thanked God for the support I had received. At the same time, I started wondering about the people who didn’t have the same support as me? This made my determination even stronger to work towards MS awareness. With the support and encouragement by my brother, I initiated an Instagram community (@multiplesclerosis.awareness) that now connects more than 25K individuals, nurturing mutual support, shared experiences, and friendships in the fight against MS. I also started the "10 minutes for MS” Podcast, creating a global community dedicated to educating, advocating, and sharing in the journey of MS warriors.

What are some misconceptions or common misunderstandings that you've encountered regarding MS, and how would you like to address them?

One of the prevalent misconceptions surrounding MS is the belief that individuals diagnosed with the condition inevitably become physically disabled and unable to live independently. When I received my diagnosis, I was just embarking on my career journey. Despite the challenges posed by MS, I was determined not to let it dictate the course of my life and aspirations. This newfound reality prompted me to relocate to another city for work, where I lived independently, undergoing necessary DMT treatments and diligently maintaining my diet, exercise regimen, and overall lifestyle. Through this experience, I developed the valuable skill of disciplining my life to coexist with MS.

It's important to recognize that MS is different for everyone, and everyone’s journey is different. Therefore, it's imperative to seize control of one's life, cultivate self-confidence, and refuse to give up on dreams and ambitions in the face of adversity.

Another misconception I came across was the notion that individuals with MS cannot marry or have children. Despite my diagnosis, I was proposed to by a man who was aware of my condition, and he willingly chose to marry me. This experience reinforced my belief that what is meant to be will come to fruition. It's unnecessary to fret over whether someone will accept you despite your illness. Additionally, I've witnessed many MS patients successfully become parents and deliver healthy babies, putting to rest any concerns about the safety of pregnancy. 

How has the support of friends and family been crucial in your journey with MS? Do you have any advice for others on how to best support loved ones dealing with similar challenges?

My family has been my biggest support, empowering me to navigate my journey with MS positively and extend support to others.

My parents have been very kind and never let me realize that I have an illness or that I am any lesser than anyone else. They made me believe that I am strong, and nothing can stop me from achieving my dreams. My sister's support led to my diagnosis. While my brother's boundless love and motivation ignited my advocacy work. Then I met my husband, who not only married me despite my condition, but is also supportive and proud of my advocacy work. I owe everything to my family's steadfast support.

My friends, upon learning about my MS, showed immense empathy and understanding, maintaining our bond despite my need to limit outings. Their unwavering positivity has been invaluable.

To friends and families of patients, I advise never treating the patient differently, supporting their lifestyle changes, and encouraging a supportive environment. Though challenges may come up, it's crucial to stand by each other through thick and thin, ensuring unwavering support and solidarity. 

What are your hopes and aspirations for the future, both in terms of your personal life and the broader MS community?

In terms of my personal aspirations, I aim to further develop my skills and pursue a career as a nutritionist alongside my role as a yoga teacher. For the broader MS community, my aspirations are centered on outreach and advocacy. I aspire to connect with more individuals affected by MS, fostering a supportive and positive environment that boosts confidence and resilience among MS warriors. My goal is to cultivate societal acceptance and empathy towards those living with MS, raising awareness about the challenges of this invisible illness. Ultimately, I envision a future where increased awareness leads to advancements in treatment and, ultimately, a cure for MS, allowing us all to look back and say, "I used to have MS."

Do you have any final words of advice you'd like to share with others living with MS who are facing similar challenges?

While receiving a diagnosis of MS can be daunting, remember that with self-love and determination, you can still pursue and achieve your dreams. "You have MS, MS doesn't have you" - embody this mantra and stay strong and positive. Despite the obstacles, maintain faith in your resilience and ability to overcome adversity. You're capable of navigating this journey with grace and courage. 

A big thank you to Surjeet for this interview!
Don’t forget to check out her Instagram page: @multiplesclerosis.awareness, and podcast.

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