Today’s AWAP* question comes from a fellow ChronicBabe, who gets right to the heart of the matter:
“I guess, to put it as simply as I can right now, I’m “being” with these questions: Is illness inherently bad? Is being ill inherently negative? I’ve been sick with ME/CFIDS long enough to know the thing is a dragon, and that it is my duty to protect everyone around me from its terrible, flaming power of destruction and terror.
“But what if we (as ChronicBabes, and as a broader society) could turn our understanding of illness on its head? What if illness could be good? Not that it doesn’t change, ebb and flow, like life. But if one believes life is essentially good, and illness is a part of life, then, is it possible that illness, too, is good? Is it possible to live this belief? Maybe I only need to believe in this possibility in order to keep working to make things as good as they can be, in order to give my life something it otherwise fundamentally lacks: purpose.
“I need to believe my life is not a waste, or a list of losses. But as I study various spiritual tracks, (and also, the more I connect with my body as a friend and beautiful being that needs my care), I wonder if much of my existential pain comes from the outside world, and my own ego. As I meditate, I keep finding myself momentarily at peace, believing in the beauty, the wonder, the strangeness, the joy of illness.
“The joy of illness? Maybe it is not a sustainable joy, a lasting peace, but if it can be experienced in one moment, why not in the next? I would be so curious to know if any other ChronicBabes wonder about this. Because if we could live in the bliss of this radical truth—the positive nature of illness—it could change everything. Couldn’t it?”
I am not feeling well at all today, so for me, AWAP means not filming a video, but instead presenting you with a quick chat accompanied by some pretty pictures to view while considering this topic. Enjoy:
*AWAP = As Well As Possible
I don’t think it’s possible for us to get any deeper than this question.
It goes to the heart of our experience of life: Do we choose to focus on the negative, or do we choose to focus on the positive?
Over the years, I’ve caught a lot of flack from folks who think I look too positively at the illness experience. People have said, “Jenni, you ask people to look on the bright side, but there is no bright side” or “Jenni, how can we spend any time on positives when there is so much negative and so many misunderstandings?”
When I first got sick, my feelings were like this: Illness sucked. It felt like a punishment. Illness was something to fight, something to rage against. And everyone around me needed to get angry, too.
Today, my perspective is radically different
I still think illness sucks, and I still think we need to rally those around us — not just our support team, but our whole society — to focus more energy on finding new treatment modalities, as well as more acceptance and accommodations for those of us with limitations.
But I think fighting illness is a losing battle, and I don’t want to waste my energy on it. And staying angry is also a waste of precious energy.
I have one chronic illness advocate friend who is angry all the time. Her social media presence is all about fighting the good fight, inciting huge emotional reactions and getting people to sign petitions. I love her, but I don’t always love her methods. I wish she would sprinkle in some positive learnings, too — not just focus on the negative.
That’s not because I’m a Pollyanna. It’s because I think there ARE positives life with chronic illness.
Here are a few things I count in the positive column:
Learning to practice acceptance. Before I got sick, I was always a Fighter with a capital F, and after living with illness for many years, I’ve learned that fighting takes too much energy. It’s not that I’ve given up; I still work as an advocate, for myself and others. But my energy is more peaceful, more focused on outcomes, less on anger. And I feel more comfortable in my skin.
Learning to love myself as I am. When I was younger, I criticized my body to a ridiculous degree. Today, I feel more at peace with myself and all my imperfections.
Crafting a work life that I love. Corporate America and a desk job were not a good fit for me, but I always tried to shoe-horn my way in anyway. Because it’s easier to manage my symptoms when I work from home, I’ve been able to craft a work life that makes more sense for me, and is infinitely more enjoyable.
Enjoying the kick-ass community I’ve helped build. I’ve made a bazillion friends through my 10 years of ChronicBabe, and I love seeing our community full of generous, creative, inspirational folks.
Shaping a spiritual life (grounded in Taoist and Buddhist philosophies and practices) that allows me to see a balance of good and bad, easy and difficult, and sit with it not in anger or frustration, but in acceptance. Being sick has forced me to slow down and walk the talk; I love integrating my spiritual practice into my health practice, and vice versa. It’s all one big bowl of experience.
Illness is not good, but it’s not bad, either
Categorizing illness as good or bad is, to me, too simplistic. I don’t think the question is meant to imply that it’s black and white, but my experience is that many in our community view the issue as black and white.
Chronic illness is bad. It makes life hard for us sickos, and everyone around us.
But chronic illness can also be good. It teaches us acceptance and creativity, and often unites us in friendships and other bonds we wouldn’t have otherwise experienced.
It’s about perspective. Can you look at your experience not as black and white, but in shades of gray? Or even better: As a rainbow of experience? Can you make more of an effort to focus on the positive, and bring others along for the ride? Can you look to find some peace in acceptance? These are our challenges, my fellow ChronicBabes. I believe you’re up to the challenge.
Now it’s your turn:
Is illness good or bad? Can you find the positive in being sick? What’s your perspective? Join the conversation in the comments below, and share your experience.
Want to watch more videos like this? Check out our AWAP Wednesday video playlist, which has almost six hours of guidance, advice, and bloopers.
Is there a question I can answer for YOU? Add it to the comments below, or shoot me an email.
Until we meet again: Be AWAP! Smooches!