12 Words: How a Shift in Perspective Can Help You Live Better With Chronic Illness

Patient Expert

At the beginning of this year, I injured myself while having too much fun with Photoshop, rendering my right elbow and shoulder utterly messed up (note to self: decrease amount of time spent at the computer).

No biggie - it's happened before. I can resist everything except temptation, have a To-Do List that grows at the speed of light and no patience for the limits imposed by my RA. So I tend to overdo -- don't we all? And sometimes, that means an injury requiring several weeks of sitting still and spending quality time with my good friend codeine. Which I did for several weeks that turned into many more weeks until finally, in the past month or two, it became impossible to avoid reality. After ten months, the problems in my shoulder and elbow no longer qualify as an injury. After ten months, they're the new normal. Permanent.

It took me a while to get there. More specifically, it took a long time of waking up to a heaviness settled on my chest, wanting nothing more than to hide under the covers, hoping The List wouldn't be able to find me (it always did). And it took weeks of being in more and more pain, feeling upset and desperate and woozy from all the painkillers.
It's hard to face this loss. Because with the loss of ability comes a questioning of self and self-worth. Who am I now that I can't do what I did before? What do I have to offer now that I can't be who I was? And slowly, you sink into a bog of doubt and feelings of worthlessness, slimed by a sense that you are only your disease, that pain and inability is all there is to you. And when you sink all the way down, you start believing that you've got nothing left to offer.

And then one day, I'd sought refuge in the park, watching dogs play and listening to an audio program called Mindfulness for Beginners by Jon Kabat-Zinn (founder of the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School). This program is used by Kabat-Zinn and his colleagues to teach stress-reduction techniques to people living with a serious illness and pain and somewhere close to the beginning of the program, Kabat-Zinn mentions something they tell participants in the classes:

_There is more right with you than there is wrong with you. _

I swear the world stopped. A dog was frozen in mid-jump for a ball, a yellowing leaf hung suspended in its flutter towards the ground and there was no sound at all in this park in a downtown neighbourhood except those 12 words. Ringing in my ears as my idea of me and my disease and who we were together shattered and knit back up in an altogether different way.

There is more right with you than there is wrong with you.

I keep forgetting that. When things are bad, I forget that I am not my disease. Forget that the trick to surviving and thriving is to adapt the idea of who you are, to distill your essence. That each time you get thrown by a flare, an injury or loss of ability, you have to grieve it and let go, peel off another layer of surface distractions that we think make us who we are. Whether you get your sense of identity from getting a lot of things done, your looks, your athleticism, etc., the fact remains that these things are not you, they're just the wrapping. What makes a person, what makes you you, is all internal. RA doesn't change who we are, it just changes how we do things.

And when I was reminded to look at what bits of me are right, I remembered that one of those things is my body. Sure, it's pretty wrecked, sure, there are deformities and yes, there is chronic pain of various intensities. But my body still gets me through each day, working harder than a healthy person's, supporting me in doing what I need to do and many times, soldiers through what I want to do. It complains a lot, but still gets me there, to the end of the day, every day. And I remembered that in many ways RA, in its continual demolishing of that outside structure, can be a gift because it teaches you what is real inside of you. And then it teaches that you can use the destruction to build a new you, free of trappings and pretending, the same inside and out. With as much to offer as you've ever had and maybe even more.

I still have a List as long as my arm and I still spend too much time at the computer. But I'm getting better at giving my body the rest it needs to support me. Getting better at recognizing what's really important and most of that isn't on the List at all. And most of the time, when I get consumed by the busy and upset about how I can't keep up, 12 words ring clean and true in the back of my mind and I can breathe again.

You can read more of Lene's writing on The Seated View