Why I Think It's Important for Every Chronic Illness Story to Be Heard

Because I blog about living with a chronic illness, earlier this year I was asked to be an ambassador for our local Walk to Fight Arthritis in St. John’s, Newfoundland & Labrador. As an ambassador, I spent a lot of time 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. A big part of my preparation was trying to find the right way to answer a very popular question: How does arthritis affect our daily life? I get asked that question more than any other, and I think it is because even though people want to understand, they ultimately have trouble relating to what we go through. Because it is such an important question, I always wanted to be able to answer it 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.

I think 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. Some people can’t take it much more than one hour at a time, because their body is in a constant flux.

During my time as ambassador for the walk, I actually ended up missing out on a lot of the interviews scheduled for me, leaving my co-ambassador to do most of the work. And that was because of the unpredictability of living with a chronic illness. When I signed up to be an ambassador, I felt strong, energetic and determined. I couldn’t wait to do those 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 I wouldn’t be able to attend some of those 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 can do to you. It not only causes painful symptoms, but it can destroy any sort of routine you have. It essentially turns your daily life upside-down. It can affect every aspect of your life in ways you probably don’t even know yet, because each day can bring new surprises.

I did what I could from home to promote the walk while I tried to recover from a lupus flare-up. Lupus is an autoimmune disease that can cause symptoms like joint and muscle pain, photosensitivity, fatigue and organ problems. Having been diagnosed only recently, I know 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-up, I can experience 10 different symptoms at 10 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 20s and 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 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 eight 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 think it’s important for all our stories to be heard.

I managed to muster up the energy to attend the walk, and I stood in front of a gymnasium full of people with arthritis and supporters to give a speech about the importance of raising awareness. I put a face and a name on a disease that maybe not many people knew about before, and I gave a real-life example of how the unpredictability of my disease can wreak havoc on my life plans.

I hope that with the help of our local organizations like The Arthritis Society, more people will come forward to tell their stories to the masses. And if we keep educating people about our illness, maybe in the near future we won’t have to keep reminding people that our diseases are real — no matter what age we are — and that the effects can be truly devastating when we don’t have the support and understanding of our community.

Follow this journey on Damsel in a Dress.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.