I knew it was going to be a great day as soon as someone said the words, “pity party” – and someone in the back walked out.
It was our annual Living Well with CML conference in Toronto, and we were discussing the impact that CML has on our lives. Nancy Pringle from Toronto’s Princess Margaret Hospital talked about chronic fatigue. And there was lots of great information about why we feel like we do sometimes, and what we can do about it.
One tip was exercise. I always find it a little amusing when fatigue and exercise are linked. Not that I don’t believe that moving your body can help boost energy – because I do. Exercise can also help clear your mind and reduce stress. There’s nothing like a brisk walk to get those endorphins going. Nancy was right. But when you experience the kind of mind-numbing, legs-like-cement fatigue that comes from taking CML medications, the thought of any kind of exercise is almost laughable.
Nancy’s presentation prompted a few people in the audience to share stories about fatigue-related challenges in their lives and at work, and to talk about how exercise was very difficult.
Things were going along quite fine until someone in the front row said something about how easy it was for exercise to be a big part of his life, and that people “should stop having a pity party.”
That was when the door at the back slammed. Someone had walked out. I know he didn’t mean it to sound so negative, but it did.
At the break, several people approached me to describe their very real troubles with fatigue, and explain that fatigue had cost them their job, or they’d had to hire help to care for their children, or had to go to bed at 7:30 every night. One woman held back tears as she described her challenges – emotional as well as physical. But despite the challenges, she most definitely was not having a pity party. Now that she had had the opportunity to listen to everyone else’s experiences, she was actually having a “reality party.”
She was exactly right. What CML means for you is probably very different from what it means to me, or to the guy sitting in the front row that day. The reality for some people is that they struggle hard; some not so much. And inside our community is a safe space where it’s okay to complain, be anxious, or sad or angry, or not. That’s what makes these conferences so beautiful: they’re an opportunity to share our experiences, learn that others are feeling the same way, and know that you aren’t alone.
What’s even more inspiring is that the guy in the front row explained what he meant, and the person who walked out came back in – with a smile. We went on to enjoy an amazing, educational day – not as individuals, but as a group of people, united by our experiences.