There are questions about being a millennial with MS that you won’t find answered in any Google search.
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 2021, 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 talk with young adults across Canada to discuss their perspectives on self-care, social media, mental health, and more.
Meet Andrea Veliz Garcia, a 32-year-old from Montreal, Quebec. Read about her MS journey on accepting her diagnosis, dealing with her family’s reaction, and coming to terms with other unexpected realities of managing the disease.
Q: When were you diagnosed with MS, and what was that experience like?
A: I was diagnosed with MS in 2014 after experiencing optic neuritis and the loss of sensation in one leg. On the day I first lost leg sensation, I was participating in the “Colour Me Rad” race at Olympic Park in Montreal. At first, my friends thought I was just being my usual, clumsy self when they saw me fall. But when I continued to keep falling down, no matter how hard I tried to stand, that’s when I knew something was wrong. A google search led me to the MS Society of Canada’s website, and I immediately suspected that I might be dealing with MS.
I was referred for an MRI and after the test, the Neuro-Ophthalmologist confirmed the words I was dreading: “You have Multiple Sclerosis.” Initially, I was stoic. It wasn’t until the subway home that it hit me and I began to tear up. My emotions were so strong that I felt like a shaken soda bottle, ready to explode.
Q: What MS symptoms do you experience today?
A: Right now, I experience a lot of fatigue. It’s challenging because it’s something I face daily and often makes me feel dizzy. It can be unrelenting. No matter how many hours I sleep, I never feel completely rested. At times, I also experience numbness in my hands.
Q: How do you manage your symptoms?
A: My body has changed since the diagnosis. The best thing for me has been to listen to my body and its signals. Going to bed at a decent hour is a must if I want to make it through the next day. Eating better and improving my nutrition has also helped. Even with all of that, my energy levels are never at 100%. At best, they hover around 75 to 80%.
Q: How has MS affected your mental health, and how do you deal with this?
A: The idea of becoming a burden to those I love overwhelms me at times and utterly affects my overall mood and frame of mind. But I do feel better about my diagnosis now, than I did at first. I’m at the point where I can accept the disease and realize my limitations.
Q: Did you have a “coming out” moment with MS?
A: My parents waited a few months before telling my family in Guatemala and the United States. MS is not well-known in my culture and there is a lack of understanding and recognition of some of the invisible symptoms, especially fatigue. My parents are working to change their perspective and learn more about MS, but that’s been harder for my extended family.
I tell friends and acquaintances right away. I want to help remove the stigma that this is only an older person’s disease and automatically means you will end up in a wheelchair. This disease takes so many forms and can happen at any age.
Q: As a young person living with MS, how do you feel about your future?
A: MS is an integral part of my life, and it layers on an additional challenge. This disease is like a shadow, always following me but not always front and centre.
Last year, I went to Disney World for a fun-filled week, walking in the sun and going to bed late. The following week, I was fatigued and completely lethargic. Just getting up to turn off the light in my room was a challenge.
Living with this shadow means I must continually adapt to meet my needs, but do my best to live regularly.
Q: How has social media shaped your MS journey?
A: At the beginning of this journey, I felt alone. But through social media, I have discovered networks of young people living with MS. These communities allowed me to normalize the things I experience daily. I now feel inspired to go after my goals when I see what others who live with the disease have accomplished. These communities offer hope, information, and a sense of belonging.
Q: As a young person with MS, how has MS impacted your career? Have you made the choice to tell coworkers or management?
A: The fatigue I experience has made attending acting classes unbearable and so, I have given up my dream of becoming an actress. I have a degree in design, a certificate in advertising, and am working a secure job. I have refocused my energy on that.
Q: How has MS affected your dating life?
A: I’ve gone on a few “dates,” but I’ve been single since the diagnosis. The idea of letting someone into the MS side of my life is terrifying. I want to accept this aspect of my life and move forward, but I’m not there yet. I come from a large family (four brothers and sisters) and I think it would be weird not to have a large family of my own someday.
Q: Do you have advice for young people living with MS?
A: Stay active and eat well! This is important for everyone, but even more critical for people living with MS. And most of all, I would like to tell them this: never forget that you are not alone.