• Jenny Livingston started the topic Real Talk Tuesday: Unsolicited Advice in the forum Activity 1 month, 1 week ago

    On Instagram, I’ve started a series called Real Talk Tuesday where we delve into the parts of CF (and life in general) that are sometimes difficult to talk about. Join the conversation on Instagram or here in the forum.


    “Try CBD oil. Stop taking those toxic medications. Push yourself a little more. Don’t push yourself too hard! Keto fixes everything. Have you tried meditation? Pray more. Take these vitamins. Drink more water! Have you considered an exorcism?”

    Raise your hand if you’ve heard these (or other) nuggets of wisdom from a well-meaning friend or a total stranger on the internet.

    Receiving unsolicited health advice is a given when you have a chronic illness. We, as humans, have an innate desire to fix things. Unfortunately, that also applies to other humans that we assume are “broken” and in need of aid.

    Giving someone unsolicited health advice implies that you know more about their condition than they do, they haven’t done everything within their power to help themselves, and they aren’t capable of researching their options and making the best decision for themselves.

    This is not to say that all advice is unwanted, because I’ve gotten some great advice regarding my health! The difference is – sometimes it’s asked for and sometimes it’s aggressively thrown at me without any warning or desire on my part.

    If someone wants advice regarding their health, I promise you, they’ll ask for it!

    But if you absolutely must share your thoughts on something, there is a proper way to do it. For example, saying something like, “Hey, If you’d like more info about ___, let me know,” is so much better than, “You MUST try ___. If you don’t, you’ll be sick forever. Also, CF isn’t even a genetic disease, it’s a mineral deficiency.”

    (That last part is something I’ve actually been told.)

    To you well-meaning friends who just want to help, I know your heart is in the right place. I do! But empathy and sincere questions from you feel so much better than trying to be fixed.

    Friends with CF, how do you deal with unsolicited advice? What’s the weirdest advice you’ve been given?

    • This cracked me up because it’s SO true and relatable. The hardest part for me is when the advice is good, but I also know I can’t commit to it. For example, I have gotten advice about cutting out dairy because it increases mucus. I know this is true and I really wish I could (I have the soul of a vegan), but almost any time I cut out dairy, I end up losing weight quickly because I struggle with digesting so many other options. We don’t have enough money to purchase most non-dairy cheeses or treats.

      Frankly, finances have a lot to do with why I can’t take well-meaning advice that I (sometimes) wish I could. In dream land, I’d get massages for my messed up muscles. I’d work with special practitioners and order healthy meal options and so on. I love researching these things as a dancer, and wish I could tend to my muscles as other dancers often do (I know it would improve my quality of life enormously!) But I can’t, because those things cost money that I don’t have. Perhaps that’s the hardest part of unsolicited advice? It’s hardest not just when someone is silly or pushy or naive… but when someone has a good suggestion, and I can’t afford it in my own life. It feels like someone dangling a carrot in front of your face, even though they’re trying to help

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