Navigating & Designing Life When Science Comes Up Empty

One thing I never wanted to teach my child was coping with chronic illness and yet here we are.

And we are at the point where medicine has little to nothing to offer her. We've tried a lot of things. Seen a lot of doctors. Her system is unimpressed and science has no idea.

After years of PT, we've been unable to eliminate the risk of falls. We've not seen sustainable improvements.

Medicine is expensive and time consuming and it's not providing much benefit. The ROI isn't there.

So I've proposed to the teen that it's time to quit. To focus on figuring out what her systems and processes will be for self care and recognize that this is likely her baseline.

It doesn't feel good to say that or have that discussion. On the surface it feels bleak, but in reality, what I'm trying to do is direct her energy into things with better ROI on her time and effort. Her education. Life experiences. Rebuilding her social network. There are things she can do that she'll get way more out of than going to yet another doctor.

Her body is going to do what it's going to do. We can't control that. So let's focus on where we have some control over outcome.

Understandably, she's upset. This isn't fair and it's hard and no fun. She doesn't want to be different. She just wants to be normal.

I've been there as a teen myself with uncontrolled asthma. But having to pay attention to your health from a young age isn't all bad. There is a benefit. I see folks hitting their 50s and for the first time having health issues and they're a mess. They don't have the know-how or discipline to really care for themselves and they can't tell when their doctors or care aren't great and they don't have good outcomes as a result. 

No child should be sick, but it does create some degree of health skills that have a pay off down the road. (Maybe I'm trying too hard to see a positive, but I really do notice a difference. Folks who've never been sick until later in life struggle so much more than those who've never had it easy. We're so used to being vigilant, to having to take extra care...we can follow directions, be proactive, we will take the pills, do the PT, get the second opinion etc...to ensure good outcomes.)

I've also been talking to her about how to plan a life with chronic illness (which I guess, thank goodness I have some direct experience with that). About looking at careers with good part-time paydays and lots of flexibility. About little to no debt for college. About how the free community college for high school will serve her well. She's welcome to live with us as long as she needs to and we're happy to cover most of her living expenses as long as we can to allow her to save up some financial cushion.  

Meanwhile, science will continue to chug along and maybe someday there will be an effective treatment or answer. But until then, life goes on and we have to live it as best we can.