Happy Rare Disease Month.
In honour of Rare Disease Day at the end of this month, I wanted to address something that can be super challenging at times while juggling your rare disease, getting involved in a community – any community.
Many people with complex conditions can relate to the fact that sometimes between your condition, work and home life, it feels like nothing else could possibly be crammed into your balancing act. This is completely understandable – it’s a lot to carry daily, however, I have always felt my best and happiest when surrounded by people working for a similar cause. Often this is a community in the rare disease community, in Canada or with CMTC-OVM around the world, however, I have always found volunteering in athletic activities extremely rewarding. In this vein, I am currently volunteering with the Invictus Games in Vancouver this month, which at times has felt stressful to add another plate to my balancing act, but has been ever so rewarding to meet so many people walking their own unique challenging paths.
I have been a volunteer for many races, athletic events, and experiences in my years at university and since, and I have always found working with individuals in these circles extremely rewarding. I cannot participate in many road races or athletic events anymore, I have too many injuries and my condition has reached a point where these things are less enjoyable now, so I find volunteering and being involved still satisfies that itch these days. While it is always a joy being a part of the rare disease community, I find being involved in other communities like the athletic one brings a different sort of joy. It’s so inspiring watching people compete in their first race, reaching for a new personal best, or trying to come back from an injury, I find it a wonderful reminder that we all face very different hurdles in life and the fight I face, while it can be lonely, is played out over and over again. As well you meet people who are so incredibly supportive not only of the journeys you are currently on and watching, but of the rare disease journey that underlines so much of our lives. It is truly a great feeling of community and support.
