NOTE: This post is directed at chronic and autoimmune patients. For COVID, I am leaning heavily on my doctors and the research institutions I trust like NIH and the CDC. The messaging may be confusing, but the science isn’t. In this instance, they will know what there is to know and I know only what I learn from them. With all the disinformation out there, patients with questions about, or who are dealing with, COVID should lean on the medical professionals they trust. Acknowledging your own lack of knowledge and looking for it from the right sources is its own form of advocacy.
I hope you all had a wonderful holiday break. I spent one week catching up and in the chaos of family and one week basically in my pajamas binging HGTV. It was awesome.
But there was one slightly sour note. As I was watching an early episode of one of the remodeling shows, a couple was arguing about whether to change the house they had or move. The person who wanted to stay loved the house, but had a medical condition that made its functionality far from ideal. They thought updating the house would solve the problems. The other half of the couple wanted to move because the medical condition made the house difficult for the spouse.
That was a “wait, what?” moment for me. Was the healthy person actually telling the one with the condition what to do because they thought they knew better than the one with the condition what would work best for the one with the condition??? That spouse, who had never had to live a day with the pain and limitations of the condition, had never felt how the comfort of a familiar, nested space that you love can ease that pain and lessen fear (rationally or irrationally) was presuming to make decisions for their patient partner. The healthy spouse gave no other reason to move.
Watching that, ooh, I was mad.
No one likes to be told what to do. It’s the motivation behind the sometimes-stupid rebellious stages we go through as teenagers – we want to establish identities separate from our parents and start making our own decisions. OK, maybe earlier than teenage-hood for some of us.
It’s no different for patients. In fact, it may be more so. Our bodies have taken some decisions away from us by limiting our activities or lifestyles and, as a result, we feel more strongly than most about being able to choose all the other things on our paths. But from friends and family who think they know because they have a neighbor or an in-law or they watched a TV show, to the doctors who are unwilling to work with us, instead substituting their judgment for our own, we have been funneled into an environment where everyone thinks they know better what’s best for us than we do.
I get it. It’s hard to watch someone you love struggle and suffer. I’ve been there, too. For providers, it’s frustrating to see a patient go in a different direction than you would recommend.
For patients, it’s tempting to allow yourself to hand over the decisions, and the responsibility, to someone else. It’s just easier, and you’re so tired. But one of the realities of being a patient is the trials that come with it. No one, no matter how well-intentioned, can take that burden from you, no matter how much both of you might want it, and when you allow others to substitute their judgment for your own, what ends up happening is a loss of agency. Maybe the first few decisions they make are the ones you would have made, but then there’s one you would not have made. And then another. And then another. Before you know it, you are no longer on your path, you are on their path. That snowballing effect can be hard to break once you decide you want to take back the agency you have surrendered.
As of the day of this post, I have travelled this lonely and difficult path for 14,201 days, sometimes for better and sometimes for worse. Sometimes I feel every single one of them in every muscle, organ, and bone. And while it would have been so much easier to let others to decide, to shoulder the responsibility for me, especially in the dark days of my teen years, I can’t regret that the only one dictating my path is me.