I am an ambassador for the 2015 Walk to Fight Arthritis in St. John’s, NL, alongside my good friend Jerry Stamp. As an ambassador I have been preparing for television and radio interviews to talk about how arthritis affects people and how important it is to support research and community initiatives to help Canadians who live in pain. Part of my preparation has been to find a good way to answer a very popular question: how does arthritis affect your daily life? People want to know what a regular day is like for someone with a chronic illness because it is difficult to wrap your head around the true impact a disease like arthritis can have on someone. And I always want to be able to answer that question eloquently and definitively. But the fact is, there’s just no way to know what a day will be like when you have a chronic illness.
Perhaps the hardest part of having a chronic illness is the unpredictability of it all. Doctors will tell you to take it one day at a time, but sometimes even that is nothing more than a comforting cliche. For some people you can’t take it much more than one hour at a time, because your body is in a constant flux.
If you tune in to local radio or television this week you will probably think that the Arthritis Society has one ambassador instead of two. You will see local musician Jerry Stamp talking to reporters about his life with arthritis and you will hear Jerry on the radio educating Newfoundlanders about some facts of arthritis. But you haven’t seen my face or heard my voice. And that’s because of the unpredictability of living with a chronic illness. When I signed up to be an ambassador for the Walk to Fight Arthritis I felt strong, energetic and determined. I couldn’t wait to do these interviews and have a part in reminding people that arthritis isn’t just an “old person’s disease.” And when I signed up I had no reason to believe that I wouldn’t be able to attend some of these interviews. I had no way to predict that I would be in and out of the hospital and off from work. But that’s what a chronic illness like arthritis does to you. It not only causes painful symptoms, but it destroys any sort of routine you have. It essentially turns your daily life upside down. It affects every aspect of your life in ways you probably don’t even know yet because each day can bring new surprises.
I’m still trying to be an ambassador for the Walk to Fight Arthritis while home in bed, attempting to recover from a lupus flare up. Lupus is an autoimmune disease that causes symptoms like joint and muscle pain, photosensitivity, fatigue, and organ problems. Having been diagnosed only recently, I know that it will take me a long time to fully understand how my symptoms will be triggered. Once I have a better understanding of my triggers I will have a better chance at controlling my lupus, but even that won’t be a guarantee. Something new can always become a trigger. Even when I’m having a flare I can experience ten different symptoms at ten different times. They may remain steady throughout my flare up, or they may come and go as they please.
There is no guide book for chronic illnesses. No two people have the same experience even if they have the exact same disease. No one can warn me when a bad day is coming, or what that bad day might look like for me. Imagine how difficult a concept that is to grasp when you’re in your twenties and you’re trying to build a career and maintain a healthy social life.
Chronic illness gets in the way. That’s the easiest way I can explain it. You make life plans, just like everyone else, and then chronic illness comes along and decides to change those plans. It doesn’t always change them profoundly, sometimes it’s just one little modification at a time. A missed interview, having to sell a concert ticket two hours before a show, a short absence from work, or having to watch your friends go on an afternoon hike without you. And sometimes it’s a giant concrete road block dropped right in the middle of your path. A lost job, a cane, an inability to pursue your dreams of being a musician.
Every single person with a chronic illness has a different story to tell. But each story has a common thread: an unreliable narrator and an unexpected plot twist. We honestly have no clue what tomorrow will bring for us. We can make plans because we still have the same good intentions that we possessed before we got sick, but we can’t promise our bodies won’t have a different plan for us. Tomorrow we might be able to go for that walk or spend 8 hours working, or we could very well be at the hospital hooked up to an IV. Your guess is as good as ours.
And that’s why I wanted to become an ambassador for The Walk to Fight Arthritis to begin with. Because I want to help a cause that is tirelessly trying to find a cure for this unpredictable disease. I want people to donate their money and efforts to an organization that is doing all they can to give back a sense of stability to people who are chronically ill. It probably seems like a mundane thing to wish for: the ability to stick to a plan made between friends, or to not have to call in sick to work. But to someone living with a chronic illness, it’s the small day-to-day things that we truly miss.
The Walk to Fight Arthritis is happening in Paradise this Sunday, June 7th. Check out the website to see when it is happening in your community and to find out how you can get involved. It’s not too late to register your family or friends as a team, or to donate to someone already registered (pick me pick me! Just click here!).
Every little bit helps, for realsies.