The ‘Leaky Faucet’ Metaphor to Consider Before Offering Advice About a Chronic Illness
When you’re sick or have a problem, people have this instinct to try and fix it. We all have this urge and offer unsolicited advice or thoughts in just about everything. It’s one of the ways we relate to each other as a species, irritating though that may be. When you’re having problems with your car or are trying to figure out why your dog keeps eating the sofa, that unsolicited advice can be helpful. When you’re chronically ill, however, it can be infinitely less helpful.
No, I don’t want to try this special diet medical science hasn’t caught up with yet. I don’t want to do yoga in the park six hours a day (not that I could if I wanted to). I don’t want to try homeopathic medicine for conditions I don’t have. No, I’m not paying $500 for this dubious self-help guru’s guide to wellness through eating nothing but mangoes for six months.
Imagine you have a leaky faucet. You have a whole team of plumbers looking at it, trying new things to fix it, but overall they tell you this’ll be a problem as long as you own the house. Then, every day, people come over and give you less-than-helpful advice, like stuffing the faucet full of sealant. Sure, it might stop dripping, but it sure won’t work as a faucet. This happens every day, multiple times.
Eventually you, like most people in that position, would stop inviting people over. For good reason, too! It’s annoying and unhelpful. You know they mean well, but they’re not educated on how to fix your faucet. Even if some of those bizarre suggestions worked on their faucet (which isn’t likely the same brand or attached to the same plumbing), they won’t work for you. You know because you’ve tried more of them than you want to admit. That’s why you hired the expensive plumbers to begin with.
Even if you have the same faucet as the person with the problem, it might not work the same. However, if you have the same faucet you at least have a better basis for offering thoughts. Though usually in that situation, the folks with similarly leaking faucets will be more likely to accept, “I’ve already tried pretty much everything.”
That isn’t to say all folks with disabilities have leaking plumbing, but we are constantly facing down a barrage of well-meaning and heartfelt advice from people who want to see us feel better. We know you don’t mean any harm, and we know you aren’t trying to be frustrating or make us feel bad. However, the constant thought that we aren’t doing what’s best for ourselves when you likely don’t know exactly what we’re doing; what our doctors have us doing; or sometimes even what our condition entails is enough to make us scream.
In an undercurrent we know you don’t intend, the world constantly telling us to do all these strange and unusual things to “fix” our problem is kind of like telling us that we can’t be trusted to handle our own issues. There are certainly folks out there who need extra help, but they likely already have it. Also, believe us when we say we are more motivated than anyone to find treatments that help. After all, we have to live with these problems in an intimate way no one else does (except other folks with the same conditions).
We don’t mean to be grouchy when you tell us to do this bizarre cleanse diet to rid our body of toxins that probably have nothing to do with our condition. We don’t intend to roll our eyes when you tell us to try this yoga thing we can’t do according to our doctors who think it’s potentially unsafe for us. It’s not that we aren’t willing to try new things and take risks, but eventually we shut off the part of ourselves that listens. We have to because there’s just so much input.
If I had to count the number of times I hear well-intentioned but unhelpful advice per day, I could probably fill a book with it. That’s one of the many reasons I don’t talk much about my struggles with anyone because I’m sick of that experience. There are a few people I don’t mind hearing from other than my physician — and those people know who they are. They also don’t barrage me with machine-gun “treatments” that would probably do more harm than good.
If you have a friend or loved one with a disability and you aren’t one of the people they rely on for that kind of help, it’s more important that you just be there with us. We aren’t a leaking faucet to be fixed, and more often than not, we have a good grasp of what it is we need to do. Accept us as we are, good days and bad, and be friends with us. Share laughter, tears, funny stories, cat photos, and other mutual passions. Just be there. That’s more help than all those bizarre “cures” any day.
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