A person very close to me told me last week that based on the way I appeared to be living my life, they didn’t think I had any ambition. Hearing that was very painful on a personal level because I feel like I’m busting ass to improve my health and build a meaningful and sustainable business, but the comment also reminded me of how frequently able-bodied individuals misunderstand the experience of having a chronic invisible illness. Just because we’re not applying to law school, or meeting other societal measures of “success,” does not mean we aren’t holding big hopes and dreams in our hearts. Some of us are simply on a different, much longer timeline. Some of us are putting an enormous amount of energy into being as well as possible so we can do even very small things that bring us joy and fulfillment.

It really gets me when able-bodied people wonder what we do with our time, or belittle our dedication to our health, because of the social pressure to prioritize everything else before self-care – job, family, housework – is precisely why so many people struggle with it. Nearly every person I’ve had as a client has said that they know that doing x, y, or z would help them feel better but they aren’t doing it or aren’t doing it consistently enough to get the results they want because they don’t feel justified in putting their health first. Usually, it is a worry about being selfish, sacrificing career goals, or not making enough money that holds people back from doing what they know they need to do.  It’s just true in our society that you need money for basic needs but usually coupled with that financial-flavored worry is a bunch of worries about what others will think if we take time off, say no to a “great opportunity,” or make other choices that seem crazy to a well person.

I used to be there, wrapped up in all that worry and struggling to do things the way other people do them. I chose instead the sometimes unpopular path of putting the health of my mind, body, AND soul first, so I can get back to my metaphorical fighting weight. All I want to do is to kick ass. I envision myself as a changemaker, movement leader, or maybe even elected official, ideally reconstructing the American healthcare system and more generally pushing America to live up to its full potential. I also want to be a dog owner, a published author, a hobbyist farmer, a homeowner, an awesome coach, and a regular hiker and biker. I see, now more than ever, that I can never do all of that as long as I’m belted into my seat on the struggle bus. 

But, as many of my spoonie brethren understand, choosing to step off the struggle bus is not without its side effects. The choice can mean delaying or even eschewing a lot of the common social indicators of success and this can be especially hard for us younger folks, both because we want those things and because we can face scrutiny from people who don’t get it and wonder why we aren’t doing what our peers are doing.

The person who said I had no ambition was holding me up against other 32-year-olds with my education and opportunities. I've been very privileged yet I’m not married, I don’t have kids, and I live in a rented house with six other people. I don’t have a masters degree, and I’m building my own business instead of working a “good” job. I can’t think of anyone in my college educated peer group who doesn’t have at least one of these social success indicators on lock. I’m certain that I could have all those markers of “success” right now, but I’m sure I would be in pain, exhausted, miserable, and isolated. I still want some of those things, but I’m happy to wait.  In my present life, I’m happy, in love, making plans, I have time and energy to do things I love, and while I still have bad days, I’m seeing measurable improvements in my health. The only thing that sucks about being an outlier, other than not getting to eat pizza, is other people completely misunderstanding my motivations.

I can see how it’s easy for someone to assume that I’ve chosen this lifestyle because I’m a hippy, or lazy, or an idealist. The truth is that, at least in the near term, I have chosen to chase a different kind of success. I’m pursuing a PhD in being alive and considering health my wealth right now. I’m looking forward to being the Alice Walton of physical vitality. Just because the choice to prioritize health is not valued in our society, does not mean it’s not incredibly valuable.