There are questions about being a millennial with MS that you won’t find answered in any Google searches.
Like how do you think about responding to DMs on days you can barely find the strength to get out of bed? Or how do you cope with the stress of financial security when you’re already concerned about your health and well-being? And when is it appropriate to tell someone you met on a dating app that you live with the most common neurological disease impacting young people in Canada?
With many impacted by MS during the formative years of their adult lives, millennials are not alone in the fight against MS. In 2020, millennials with MS are diving into the workforce, starting families, and advancing their education – all during the most significant global crisis of the last century. In our latest blog series, ‘Millennials with MS,’ we sit down with young adults across Canada to discuss self-care, social media, mental health, and more to hear what they have to say about life with MS.
This week, we sat down with Christina Arcena Andaya, a 26-year-old beauty pageant winner diagnosed with MS in 2016.
Q: When were you diagnosed with MS, and what was that experience like?
A: I was diagnosed with MS in 2016 by my neurologist at St. Michael’s Hospital in Toronto, Ontario. My family doctor referred me after discovering 12 brain lesions in my MRI scan. At first, I was thankful that it was not a tumour. But at the same time, it was a wake-up call to the importance of learning about MS and understanding my family history of chronic illnesses.
I didn’t experience any symptoms when I was first diagnosed. But my main concerns were my headaches and back pain, which made my parents believe that there was something more.
Q: As a young person living with MS, how do you feel about your future? Can you speak to the impacts of MS on your mental health?
A: Since my diagnosis, I have experienced fatigue, fogginess (for example, memory loss), and back pains. At first, I was scared because MS was so new to me and my family. I felt sad and helpless knowing that there isn’t an immediate solution to make the disease go away. Knowing that my symptoms can reappear at any given moment is disheartening and hard to come to terms with. In my daily life, I just endure quietly. I have been doing it ever since I was diagnosed. I’m not mad, just exhausted.
Since I’m the only family member with MS, I’ve gotten many questions about what this means long-term. How will this affect my future children? Can they get MS too? Initially, my mom was concerned because she wants me to have kids. Thankfully, it’s possible to live with MS and have children if you choose. When the time is right, I will consult my doctor on what’s best for me.
According to my mother, “health is wealth.” As long we’re healthy, that’s all that matters. My family history includes cardiovascular issues and type-two diabetes, so this is an added form of stress to consider while battling MS. Not only is my own health my priority, but my family’s overall health too.
Q: As a young person with MS, how has MS impacted your career? Have you made the choice to tell coworkers or management?
A: I was an undergraduate student at York University when I learned about my diagnosis. At first, it was a lot to take in – I was just beginning to learn how MS could affect me. As time went on, each day became more ordinary and I began focusing only on what I can control, like graduating. When I received my first job, I disclosed my diagnosis to my boss. Like many others, he was shocked but very supportive. So far, MS has not hindered me from pursuing the things I am most passionate about career-wise.
Q: How does your MS diagnosis impact dating or your relationships?
A: Prior to COVID, the only area where MS affected my dating life was the fact that I don’t drink. I can’t drink alcohol since I’ve been taking Tecfidera, so I’ve often had to address this on first dates. So far, the people I’ve dated have been understanding of this.
Q: How do you feel about your financial security while living with MS?
A: I worry about the limited amount of government support some people with MS are eligible to receive. When I began taking my treatment in 2018, I knew it would be expensive and I was grateful for my parent’s private insurance coverage. At 25 years old, I had to get my own insurance coverage, which meant my insurance would cover only 80 per cent of my medical expenses. At the same time, the Ministry of Health covered the remaining 20 per cent. But some people are not as fortunate. Treatment is essential to reducing the frequency and severity of relapses and to slow the progression of disability. I fear the implications of high out-of-pocket costs means some people are unable to afford treatment, which can lead to the progression of the disease – potentially to the point of disability.
According to a 2020 report released by the Conference Board of Canada titled “Accessing Disease-Modifying Therapies for Multiple Sclerosis: A Pan-Canadian Analysis“, seven per cent of disease modifying therapy (DMT) costs are paid out of pocked by those living with MS. In 2018, this represented $39.3 million in spending for individuals and their families. For Canadians affected by MS with limited income, these out-of-pocket expenses required to afford their DMT contributes to financial insecurity. Read the Conference Board’s report here.
Unfortunately, the pandemic has altered our current state of living and put my finances at risk. As much as I want to return to work, I must consider my own health and my parents’ health as well. My elderly father retired in 2012 and has type-2 diabetes, high blood pressure, and high cholesterol. While my mother is still currently working as a Toronto District School Board (TDSB) caretaker, she also has similar health issues as my father. I don’t want to work outside the home and risk potentially spreading the virus in my home. Their health, as well as mine, are my top priorities.
Q: How has social media shaped your MS journey?
A: Being a young adult with MS is a constant learning curve, but social media has given me a platform to speak out and bring awareness to MS. This year, I’ve had the privilege to learn about many people and their battles against MS through the social media community. Seeing other people share their stories online makes me feel less alone.
As an MS-fighting pageant contestant who competed in Miss Galaxy Canada 2019, I’ve fostered a community of followers who live with MS and resonate with my resilient spirit. When I competed, I displayed my confidence on stage for everyone to see as Miss Galaxy Toronto. It paid off in the end because I placed as second runner-up and showed up for my supportive friends, family, and the MS community.
I feel I’ve also helped others living with MS by sharing my own story. Recently, I created a Q&A on Instagram, asking my friends and followers: “What do you want to know about my MS journey?” I was happily overwhelmed by the number of questions I received.
I’ll never forget the time I stumbled upon a woman’s comment saying she was recently diagnosed with the disease. We quickly connected online, and she was happy to see that I can still live well with MS and not let it control all aspects of my life. Opening up to her and being able to help brought me to tears and encouraged me to face my battle with more courage. It makes me grateful to think that my story can inspire other MS fighters, in the same way their stories inspire me.
Want to read more posts from the Millennial and MS series? Meet Trish, who has turned to mindfulness and meditation to support her through her MS journey. Read her interview here.