Self-Advocacy Q&A with Matthew Sebastiani: Ulcerative Colitis

“The more we speak about the conditions we live with, the more we will promote awareness and a more inclusive/accessible society.”

— Matthew Sebastiani

Tell us a bit about yourself, your diagnosis journey and the invisible condition(s) you are living with.

My name is Matthew Sebastiani. I’m a passionate community volunteer, advocate and IBD Warrior. When I was 18 years old, in my first year of university, I began experiencing very adverse symptoms, lost a lot of weight and made several visits to doctors and the emergency room. I was eventually diagnosed with ulcerative colitis. I was told that the condition has no known cause or cure. At the time, I didn’t know anyone who had it, nor did I understand what it would mean for my life. Since my diagnosis, I’ve had several flare-ups that have caused challenges and disruption in my life. Since 2020, I have been on an infusion-administered medication which has helped to manage my symptoms.

To make a difference for those who live with IBD, I’ve been volunteering with Crohn’s and Colitis Canada for many years. I’ve had an opportunity to volunteer alongside amazing people locally and nationally in different capacities. Since 2018, I’ve been the Vancouver Chapter President and have (co-)chaired our main fundraiser Gutsy Walk since 2017. With a policy background, I enjoy advocating for patients; for example, promoting access to public washrooms. My goal is to ensure that those who live with crohn’s or colitis know they are not alone and to raise awareness to try to bring down barriers to make life easier for those challenged by these conditions. For my contributions over time, I was honoured to be named Crohn’s and Colitis Canada’s National Unsung Hero in 2020 and won the charity’s prestigious Finkelstein Award in 2023.

How would your friends describe you and your personality?

If you ask my friends to describe me, I believe they would say that I’m compassionate, positive, reliable and resilient. I think they would also talk about my dedication to the things I’m committed to and ability to work hard to achieve results. Even when life brings challenges, my friends will say that I don’t get discouraged by them, and instead turn those challenges into strengths.

How has the invisible condition impacted your life?

My life has never really been the same because of my colitis. Apart from the flare-ups, doctor appointments, and medications over the years, I’ve also had to be mindful of my diet and listen to my body to prevent, mitigate, and manage symptoms. I’ve come to appreciate the moments when I’m well so that I don’t waste a moment – and try to do as much as I can in those times, because I know they don’t last forever.

I can also point to some positives that have come out of living with ulcerative colitis. I’ve met an incredible network through Crohn’s and Colitis Canada, people I likely wouldn’t have otherwise met. I also recognize that I am who I am today because of the condition I live with. When life brought challenges, I had no choice but to overcome them starting at 18 years old. In a way, the condition helped me build personal grit. When people ask me why I don’t just rest and take it easy, I continue to go forward because I want to prove to myself that I can do all the things I want to achieve and use my voice to encourage others with invisible conditions to do the same. My message: Aim high and achieve your goals, no matter the obstacles we face.

Are you comfortable sharing about any stigma or discrimination you’ve experienced due to your condition?

I can’t deny the feeling that people in the past have looked at me as “sick” and written off what I can do. But I don’t pay much attention to those experiences. I’m very forward-looking and positive. My perspective is that it’s much better to surround yourself with a supportive network and to find a job where your employer is understanding from the beginning and will support you because of any condition you live with.

I can honestly say that all my employers (and supervisors) have been very understanding and have supported me. So, they are out there! While in university, I consistently found the support I required. Whether at SFU during my undergrad or at UBC for my MBA, professors were consistently compassionate, and the respective disability services were helpful whenever I needed additional support.

What does self-advocacy mean and how have you managed to advocate for yourself? Any advice to share?

Self-advocacy is so important because, at the end of the day, we are our own best advocates. This is speaking up for yourself, asserting your rights, and promoting your interests. It is about speaking up for your needs, voicing your opinion, and promoting your well-being. I find I’m able to advocate for myself by being informed (doing my own research) and asking the right questions.

And I would add that it's not just about self-advocacy, but I truly believe in collective advocacy. As a passionate volunteer, I take every opportunity to raise awareness of crohn’s and colitis, in hopes of making things easier for others who live with these conditions and creating a space where others feel comfortable speaking about their condition(s).

If someone is struggling to advocate for themselves, what advice would you offer them?

I would say you have to identify your needs first. Don’t ignore anything important, especially if it’s health-related. I also suggested being informed; that could include doing research or preparing for any meetings/appointments you are going to have. You may want to seek advice from your closest family and friends. Having a conversation with someone you trust in times of uncertainty may help to generate ideas on how you can advocate for yourself in different situations. There may even be times when this support network can advocate for you; for example, after a surgery or while staying in hospital.

What motivates you to disclose your disability despite the courage it requires?

When I was first diagnosed at 18 years old, I was nervous to disclose that I live with a chronic condition. I didn’t want people to think less of me and what I was capable of. I was also worried about my career prospects. However, over time, I realized that people suffered in silence. I made the decision that I would use my voice to help others. I learned that despite crohn’s and colitis having some of the highest incidence rates in Canada, many don’t talk about it. Over time, I’ve heard from so many people who know a relative, friend or colleague who lives with crohn’s or colitis. The more we speak about the conditions we live with, the more we will promote awareness and a more inclusive/accessible society.

It does take courage to talk about the condition; there’s nothing glamourous about living with a condition that affects digestion (or talking about washroom issues). But I’ll use my voice to shine a light on the topic and encourage others to do the same. I’m so thankful to have both worked for and volunteered for a variety of organizations that value my contributions and support me as an individual. All of my employers have encouraged my involvement with Crohn’s and Colitis Canada, which always means a lot to me.

Recently, there’s been increased recognition and accommodation for invisible conditions. Discussing it brings me comfort, as I no longer feel the need to conceal my experiences and suffer in silence.

What encouragement would you offer to someone living with an invisible condition who is considering whether to openly share their journey and experiences?

I want to acknowledge the immense challenges people with invisible conditions experience. It’s not easy. You are seen, and I wish you more good days than challenging days. Living with an invisible condition has instilled in me a level of determination to achieve my goals even more! When someone says I can’t, I’ll find a way to do it. In my mind, if I can suffer through a flare when my condition causes me to become very sick, and I can still get through all my daily commitments, I know I can do anything! Never give up!

I would encourage others to share their journey and experiences. Through sharing, we raise awareness about the circumstances others live with. We can collectively improve accessibility and inclusion for those who may not fully understand our challenges. At the same time, we create a space for dialogue and support, fostering recognition that others are experiencing similar challenges.

Together, we can bring down barriers and create a more inclusive society.

**Bio:**
Matthew Sebastiani is a passionate community leader and skilled policy analyst. Matthew has a diverse professional background in government, financial services, and biotech. He currently works for the Bank of Canada, and previously worked in Vancouver’s biotech sector and as a policy advisor to the Deputy Leader of the Senate of Canada.

Diagnosed with IBD at 18 years old, Matthew has been actively involved with Crohn’s and Colitis Canada for several years in various capacities fundraising for a cure and advocating for patients. He is currently serving as President of the Vancouver Chapter, has also chaired/co-chaired Vancouver’s Gutsy Walk since 2017, volunteered three years on the National Volunteer Advisory Committee, and has helped to expand the charity’s GoHere Washroom Access program. In 2021, he was honoured to receive Crohn’s and Colitis Canada’s National Unsung Hero Award and in 2023 received the charity’s prestigious Finkelstein Award.

An active community volunteer, Matthew is also President of the Board of Place des Arts, Board Director of the Coquitlam Foundation, Board Director of the Association of Professional Economists of British Columbia (APEBC), and is a steering committee member of the Business Council of British Columbia’s (BCBC) NEXT Leaders Council. Between 2017-2021, Matthew was annually appointed to the City of Coquitlam’s Universal Access-Ability Advisory Committee, advising City Council on policies related to accessibility. Since 2022 he has been appointed to the City of Coquitlam’s Economic Development Advisory Committee.

He holds an MBA (Finance) from the University of British Columbia’s Sauder School of Business and a BA (Honours) in Economics from Simon Fraser University.
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Matthew Sebastiani