November 9, 2015

Doing it right doesn't mean it will work

There's a particular brand of magical thinking out there among parents. We think that if we do it RIGHT then the results will be what we desire. As if we deserve the best when we try the hardest and, by corollary, if we do not get the best outcome we did not do it "right." This is at best laughable but also tragically cruel if you think about it. Just because you did it right doesn't mean the outcome is going to be glorious. That's as illogical as thinking that wearing a seat belt prevents accidents.

For parents facing really difficult caregiving I get it: we CARE A LOT about doing the right thing and we should. We need every ounce of hope and energy and the decisions we make do matter. But those decisions are not magic.

It saddens me to see parents for whom things have not been successful feeling as if they have failed. It's even worse to see parents feel criticized by other parents. Sure, parents do fail, but the outcome for our kids isn't the measure of our efforts or decisions. In the case of mental illness things do not always come out well. In fact this is why it is urgent that we get more research and do a better job applying what we do know -- because the bad outcomes are horrendous and we have to do what we CAN to increase the chance of success.We stumble along as best we can, all of us, making mistakes and doing our best -- all of us.

But when the illness or circumstances keep our loved ones from wellness too often all that hope and magical thinking can sound like criticism. This should not be. The outcome does not tell us anything about the family or the treatment providers or the health system and NOTHING about the patient's "wanting." We can all do everything perfectly: the patient and the family and the professionals and society AND IT CAN STILL GO WRONG. We can also make mistakes (we all do!) and still come out all right.

Let's not add to the pain and grief of families with judgement and second-guessing. Let's encourage fellow parents to do what they CAN and stop when they must. Let's accept no one does this perfectly anyway. Our job as a community of people who get it is to be supportive of one another and empower one another. That means honoring the choices of others. It means offering our own stories and the information that helped us but not requiring others to come to the same magic formula. Let's not judge effort by outcome, or do anything but hold up our fellow families. And, let's not fool ourselves into thinking that our successes make us better people or more than one anecdotal story.

Families whose loved ones remain ill or have permanently disengaged or have died need the support of the community as much as those just entering it. Their wisdom and experience are necessary and valuable, and their grief is not to be turned away from or made unwelcome. The reason that happens is fear, I believe, fear by association and fear of rejection. We, as a community, are stronger than that!

2 comments:

  1. and it (whatever it was) not having worked (whatever that is) doesn't mean it wasn't right (you'll be able to guess the contents of these brackets) or evidence based

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  2. Thank you for this Laura. As a sufferer who is still struggling after 20 some years, I often feel like a failure as I watch countless others around me recover after what seems like just a short while. What am I doing wrong?, I wonder. What's wrong with me that they can recover and I can't? Your words help me to see that it's not necessarily that I'm doing anything wrong or that I'm not trying, it's just that I'm on a different journey. My path may be rockier and longer than some, but I WILL reach the end of it. I will not let the ED win.
    Caregivers: Hang in there. Don't beat yourselves up when your loved ones don't respond the way you've been told they 'should'. They are in there, fighting, even when it doesn't look like it. AND it's not your fault if/when they don't respond. They are doing the best they can, just as you are. Be kind to yourselves. Let's all remember there is only one enemy, and it is ED. The rest of us need to stick together. We're all on the same side.

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