There are questions about living with MS that you won’t find answered in any Google searches.
Like how do you think about responding to Instagram DMs when you can barely find the strength to get out of bed? Or how do you deal 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 biggest global crisis of the last century. In our latest blog series ‘Millennials and MS’, we sit down with young adults across Canada to discuss topics such as 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 Trish Yeung, a 30-year old woman living with MS, who has turned to mindfulness and meditation to support her through her MS journey.
Q: When were you diagnosed with MS and what was that experience like?
A: I experienced my first relapse in May 2017. I suffered from two severe migraines, followed by numbness in half my body and even my tongue. Several months passed before any of the numbness subsided. It felt like such a long wait for my diagnosis, which was frustrating and exhausting. In June 2018, after multiple neurologist appointments and a period of uncertainty and growing anxiety, I was officially diagnosed with relapsing-remitting MS (RRMS).
Q: What MS symptoms do you experience today?
A: The symptoms I most commonly experience are fatigue and slow cognitive function. I’ve found that I still have difficulty differentiating between MS fatigue and common fatigue. For me, dealing with fatigue is the most challenging because even something as simple as breathing can suddenly require effort. Enjoyable hobbies, such as reading and cooking, can become daunting or exhausting. MS fatigue impacts my mental health because I notice how fatigue, or other invisible symptoms, can carry the stigma of laziness and I often feel the need to justify my actions or behaviours. Other invisible symptoms I’ve experienced intermittently are migraines and tingling on my left side.
Q: How has social media shaped your MS journey?
A: When I was first diagnosed with MS, I only told my immediate family and closest friends. I felt like I was living a secret life by not letting others know. I finally decided to let my guard down and share my diagnosis on Instagram a year later. That was the most significant “coming out” moment because I received so much love, support, and understanding from my friends, family, and the online MS community. It was at that moment that I felt like my healing journey had begun.
I’m thankful that social media has been an incredibly positive experience. Social media can be tricky since it can be used in an unhealthy way. However, used in a productive way, it can become such a powerful tool for education and community building. In my case, it is used solely for honesty and genuine connection. Most times, people can’t relate to my MS journey, but I’m hoping social media can bridge that disconnect.
Q: As a young person living with MS, how do you feel about your future?
A: Planning a future while living with a chronic illness is never easy. Sometimes, I fear my health will deteriorate and my quality of life will decline.
My mother also has secondary-progressive MS. Being an experienced caregiver gives me an added understanding of the dark side of MS, but also that I must embrace the challenges and move forward. Since she progressed so quickly, and her MS was so severe, I can’t make comparisons for the sake of my mental health.
Having MS for over two years now, I’ve learned to embrace uncertainty as best as possible. MS has allowed me to slow down the pace of life and look at each day as a new opportunity. I’m slowly learning to redefine my boundaries to prioritize my health, which helps with my guilt when I need to cancel plans last minute.
With a growing understanding of MS, I hope to continue to live healthily, fighting against MS wholeheartedly. If there is anything I have learned with MS, it’s that I am stronger and more resilient than I thought.
Q: What was it like to start your career as a millennial living with MS? In what ways has the disease impacted your work life?
A: When I first started working, concealing my diagnosis from my coworkers was an overwhelming burden. I wanted normal work relationships – ones built on sincerity and trust. And while I’ve never had issues with my job performance, it is sometimes challenging to execute my responsibilities while managing my MS symptoms.
Once I made my diagnosis public in the workplace, I learned how supportive people could be. Because of my MS, I’ve noticed I am more open and upfront about my needs. By nature, I go with the flow, but MS forced me to voice my thoughts at work. It’s hard some days to keep up because of the workload, but you must continue to advocate for yourself, follow-up, and persevere. I communicate with my colleagues about what I can handle and when I need a break. They have been incredibly supportive and caring.
I want people to know that I’m capable and competent. If there is judgement, then it’s outside my control. My health comes first, and it’s important that I don’t let people push me past my limits. No matter what, remember to live life genuinely and advocate for yourself.
Q: How has MS affected your dating life?
A: Dating is already difficult, but with MS, it’s become a daunting reality. I’ve found myself asking questions like “when should I tell them about my MS?” or “how soon is too soon?” You never know how the other person will react. In my opinion, telling them earlier is better. I want to respect their time, so they should know before things get too serious.
With or without MS, there is always a fear of being rejected. But if I told someone about my diagnosis and they responded negatively, I know that they aren’t the person for me. Observing the reactions almost serve as a filter, helping weed out the people who I feel might not grasp compassion or understand my situation. The person I date should be okay with accommodating my needs when I need to take care of myself. I’ve become a lot more guarded when it comes to meeting new people, but I’m slowly learning to embrace the vulnerability.
Q: How do you prioritize self-care?
A: Yoga and mindful movement are helpful, especially during days where I experience brain fog. Deep breathing and gentle yoga help me clear my mind and opens my heart. Before my diagnosis, I received a yoga therapy certificate, which showed me that yoga is more than just a physical exercise. I taught yoga to people with brain injuries, so this goes beyond my MS. It’s adaptable for any chapter of your life’s journey. No matter your symptoms, mindfulness is something you can always do.