To the people giving me medical advice about my son

Working with medical professionals as a parent can be frustrating, even infuriating. You encounter doctors who don’t know what they’re talking about, or maybe do know what they’re talking about but don’t know your child and aren’t listening. You come up against the lack of interdisciplinary knowledge and discourse, the fractured nature of our current medical system. You find yourself caught between specialists who disagree and having to make a decision. You feel helpless, worried, ignorant, and too knowledgeable, all in the same consultation.

But you know what else is infuriating? Laypeople, acquaintances, who tell me that my son’s (carefully selected) doctors don’t know what they’re doing, and that instead of listening to them I should …

-give him probiotics/herbs/homeopathy

-take him to a chiropractor/cranial-sacral therapist/naturopath

-change his diet

… because then everything will be fixed and I won’t need all that stupid allopathic medicine, woohoo!

I’m not against complementary medicine. I’ve been to chiropractors and used probiotics. Essential oils can be nice and I believe good nutrition is important. What I do not believe is that any of these things are a substitute for modern scientific medicine as practiced by mainstream doctors. Monkey gets probiotics whenever he’s on antibiotics and for a while afterward, with the full approval of his evil Western doctors. I’ve tried giving him homeopathic remedies for pain and it didn’t do a damn thing. You know what did? Tylenol. I see no reason to take him to a chiropractor as there is nothing wrong with his spine.

Parents of medically complicated children don’t know everything, but we are experts on our children. We deserve to be treated as such, not only by the medical professionals taking care of our kids, but by the people in our everyday lives whom we confide in. Instead, we get advice from people who don’t even know enough to know how profoundly ignorant their advice sounds to our ears.

To those people, I have this to say: You show your ignorance when you belittle or dismiss wholesale the profession that is keeping our kids alive and healthy. People who spend a lot of time at hospitals see both the worst and the best of contemporary medicine. We see how much scientists and doctors still don’t understand, but we also see how much they do understand. We’ve been awe-inspired by what these doctors can do in the OR, by the available technologies, knowing that in another era our child would be pale and sickly or simply dead. When we’re not banging our heads against a wall, we’re on our knees in gratitude for what medicine can do.

To those who tell me I shouldn’t trust his doctors or the medical profession: Would you trust someone who saved your life?

To those who tell me “he’ll be fine” or “he’ll grow out of it” without intervention: Where’d you get your crystal ball? Can I borrow it?

To those who tell me he needs probiotics when I’ve been telling you about respiratory distress and congenital tumors: Do you actually listen to what other people say?

To those who tell me his problems are being caused by processed foods (incuding nutritional beverages): Let’s trade places and you can watch your child starve because they won’t or can’t eat the foods you think they should.

To those who tell me to “do my research”: What the hell do you think I’ve been doing for the last two years? By the way, how many nights do you stay up late reading articles in medical journals? How much time do you spend corresponding with parents who share your child’s condition(s)? How many specialists do you consult before you make a medical decision?

Doctors who condescend to me and treat me like an idiot get fired from my son’s team. So all of you acquaintances out there who think you know more about my son’s health and development from talking to me for five minutes and seeing him for ten than I do, you who are instant experts on subjects his specialists have spent decades researching and treating and are still learning and consulting with each other about, guess what?

You’re fired, too.


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