(Artwork by Emily Mc Dowell. Please see her amazing empathy cards at emilymcdowell.com)
I never, ever thought I’d be writing about chronic illness, let alone experiencing it at such a young age, but here I am.
Chronic illness is defined as an illness that lasts more than three months. When I had cancer, I naively thought that I’d be back at work within a few months and that would be that. Cancer would be in the rear view mirror and I’d be 100% healthy.
I was blessed that when my two years of treatment were over, I was totally cancer-free and have remained that way ever since. This is incredible, and I do not take this lightly.
What I didn’t anticipate was that after returning to work for six months, that I would be off again for health reasons. Many of the side effects of cancer treatment have remained and I’m working to move beyond that back into health, and back to work. A doctor once told me that many cancer patients learn to live with chronic illness even after their cancer is gone, as they are left with sequelae from cancer and it’s treatment. The medical community sure knows how to be a downer!
I’m “supposed” to be back at work but I am not. I feel guilty about this some days, but I also know I’m not well enough to work yet.
Someone I know who had cancer, didn’t end up with as many side effects as me, and didn’t have a problem returning to work. It’s really hard not to compare oneself to others and I have to practice not doing this on a daily basis.
What keeps sending my mind and thoughts scrambling these days is the concept of chronic illness that that doctor had spoken of. It sounded scary, lifelong, and utterly depressing.
I am researching ways to be healthier and “live with chronic illness.” The wording out there is miserable. Some of the phrasing includes: “managing chronic disease;” “suffering with ongoing side effects”; and my personal favourite, “coping with debilitating illness.” This may be a matter of just semantics to some, but to me, the way I think about the situation affects the way I can manage it, and trickles down to every aspect of daily life.
I realized as I read that it was time to redefine and reclaim the experience of chronic illness. This is not to say it doesn’t exist, or that it’s not serious and debilitating, and much worse for some than for others. However, I believe for me that instead of trying to overcome chronic illness, I’m officially seeking Perpetual Wellness instead.
When I think about illness, I tend to think limitations, a situation or symptoms just being thrust on me with no control of my own, fatigue (I would like to punch that word in the throat!), managing symptoms, and a life of ongoing problems to be solved.
When I think of wellness, I think of having more control of the situation, having options, choosing how I want to handle things, and thriving, no matter what.
I am now searching for elements of Perpetual Wellness, choosing what treatments and practices work for me. I will seek medical attention when needed but will also consider other opinions. I will remind myself that although living with symptoms can present challenges, I do have a great deal of control as to how to cope with them and thrive simultaneously.