YLLW | Unpublished | Independence!

Today is the day Americans celebrate colonial independence, the beginning of a centuries-long experiment in representative democracy. But our desire for political self-determination stems from a much more basic human need: agency. We need to feel like we have some control over our own lives.

But half of us face silent challenges to our independence every day. Chronic illness doesn’t just confront us with some uncomfortable symptoms. It attacks our identity and our ability to effect personal control in our own lives. And it does this in three ways:

1. Real physical limitations. Often these can’t be seen from the outside: pain, fatigue, and constant stress take their toll. We may not be able to accomplish our goals in the ways we otherwise could. We may have to rest more often. We may have to get ordinary things done through a grinding haze of pain. We may have to creatively re-imagine what we do. We may have to give up cherished activities. But we still need to find ways to get things done. And we need an environment that’s adaptable and inclusive.

2. Limitations due to loss of personal agency. It’s easy to get discouraged when everything is more difficult and there’s no relief in sight. We all want to think we’d never be the ones to give up. We dismiss others as “weak” when they do. But it’s just not that simple. Sometimes, giving up seems like the only option, but it doesn’t have to be forever. We can regroup and rebound. We are remarkably resilient. And others are facing challenges you can’t really know.

Our personal sense of agency is actually pretty fragile. Most of it is, after all, a necessary illusion we tell ourselves to keep trying. We need to believe we can accomplish more than we actually can — because sometimes that accomplishment really is possible, after all. Many of us have never had our sense of agency truly challenged. But a chronic health condition will do that. We can’t run from it. We have to find new ways to feel that ability to influence our world, even as evidence of our human failings stacks up in our experience.

3. Limitations from how others see us. “Sick” is an easy stereotype we use to fill in the blanks of our ignorance. If we know someone is “sick,” we can easily presume they’re helpless. But that’s not at all the case. We need to do things for ourselves and for others. We need to contribute to our world. That doesn’t change. But we’re easily dismissed and, perhaps worse, others stop asking us to be involved or try to do things “for” us without first asking what we need. That’s humiliating and discouraging. It corrodes relationships and robs everyone of valuable contributions yet to be made.

The difference between “sick” and “well” is much smaller that we assume, but it is real and it must be accounted for. Living with a chronic diagnosis doesn’t make us any less human. Nor does it make us helpless or reduce our desire to contribute.

We all need that sense of “agency,” of personal control and the ability to have an effect on the world. So this Independence Day, celebrate by acknowledging a shared need that binds our humanity: we all need to feel like we’ve made a difference. Make a difference for someone else — and, just as important, let someone else make a difference for you.

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