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MS is always there but it does not define me

It took me a while to figure out how to begin my story, because it’s not something I tell very often. My diagnosis of multiple sclerosis and subsequent journey with Overcoming MS is something I keep deeply private. Only my family and a few of my closest friends know about this part of my life.

 

“There are further findings on your MRI report, please come back in for another appointment”.

After receiving positive news just hours earlier, my official MS diagnosis came after the neurologist failed to print off the second page of my MRI report (stating a new lesion). I was relayed this information via a text message from the receptionist at her office. The lack of compassion was astounding – I couldn’t believe that this was how my life-altering diagnosis was conveyed to me.  

It took me a while to figure out how to begin my story, because it’s not something I tell very often. My diagnosis of multiple sclerosis (MS) and subsequent journey with Overcoming Multiple Sclerosis (OMS) is something I keep deeply private. Only my family and a few of my closest friends know about this part of my life.  

I am an American who grew up in the Northeast of the USA. During university, I lifeguarded on the beach in South Carolina and I met a fellow lifeguard (a handsome Australian) and we fell in love. I finished university and we moved to Australia together, got married a few years later, and the rest is history. We’ve been living here for over 8 years now. He gives me strength, hope, and happiness in this journey and in life. I am thankful every minute of the day I have him by my side.  

In 2016, when I was 28, I was working as a public health researcher at a large Australian university and finishing up my Master’s degree at the same institution. I was planning to start a PhD in a field I was passionate about the following year. Although stressful (and more stress than I cared to admit at the time), I felt the excitement and anticipation of something new on the horizon.

Then, one morning I woke up with a hand that I couldn’t shake awake, it was numb, tingling and burning. The symptoms became progressively worse and remained for over 2 weeks. I thought I had carpal tunnel syndrome. First, I visited a physiotherapist who gave me a wrist brace, but the next day my hand was worse and it continued to progress up my arm, onto my torso and down my leg. I knew this wasn’t carpal tunnel syndrome. This terrified me and more so because no doctor I went to was able to provide me with any answers that made any sense (one doctor sent me to the emergency room because he thought I was having stroke, another gave me referrals to get MRIs of all of my limbs!). I knew in my gut and from my own research that this wasn’t what was supposed to happen. I finally saw a doctor who referred me to a neurologist. I was first diagnosed with Clinically Isolated Syndrome, and later, with MS.  

When I first told my best friend about my diagnosis, we cried together and she asked me if I was scared. I was scared, but I also felt devastated, empty, and angry. I believe knowledge is power, so I found comfort in learning everything I could about the disease. I read countless research papers, books and every piece of information I could find about MS. I became an expert. Through my research, the work of Professor Jelinek resonated with me. I experimented with other ‘MS diets’ but none were as evidence based as OMS. I was convinced.  

Shortly after my diagnosis I saw two separate neurologists who were firmly set in their views that lifestyle alterations, although they may be good for overall health, had no impact on the long-­‐term outcome for MS. This was frustrating, especially when I knew that’s not what the research shows. There are still so many unknown aspects about MS, and it’s unfortunate that some neurologists are unwilling or unable to admit this. My point here is not to discredit what neurologists do, but acknowledge the confidence and difficulty it takes to assert yourself in the face of dissent from an expert. At the end of the day, the person who cares most about your health is YOU. You know your body better than anyone else, and you need to be an advocate for your own health.  

Over the past few years since my diagnosis I have come to realize in a significant way that I have complete control over the way I frame challenges in my life. It is wholly up to me whether I decide to view a situation as negative or positive and how that subsequently affects different parts of my life. Obviously, in an ideal world, none of us would have MS. There are days that are made so incredibly difficult by this disease. But honestly, having MS and dealing with this diagnosis has made me into a stronger, better, and, ironically, a healthier person.

Although my contact with the OMS community has been minimal until this point, I follow the guidelines every single day. I stopped eating dairy and meat the day I finished Professor Jelinek’s book (a couple days after my diagnosis) and haven’t eaten it since. I eat fish weekly (even sardines, which I avoided even the smell of before!), have flax seed oil every day, I meditate, I exercise, all of his guidelines are ones I have implemented in my life. Most importantly, I have learned how to deal with stress in much better ways. I try to appreciate every day and the people in my life.  

I encourage all of you OMSers out there to set some goals and dream big, you may have a diagnosis of MS but that doesn’t mean you can’t achieve the things you’ve always wanted to. This disease unifies us, but we all have different things we want to achieve in this life. This year, I’m studying for the medical school admissions test and applying to medical school to be a doctor. My husband and I have welcomed our first child together, and although MS is always there, it does not remotely define me. OMS provides a giant network of people who are taking charge and are living this truth every day. This provides something that is invaluable to everyone – hope.  

The writer of this blog would like to remain anonymous

Personal story disclosure