To the Medical Professionals Who Listen — and Those Who Don’t


My son Ben’s medical problems emerged in his first year and have been continuous throughout his 10 years of life. In parenting him, I have become an expert. While I certainly don’t know as much as doctors about the individual diseases, I know more than anyone about Benjamin. There are innumerable questions about his health and ways to optimize his care that aren’t in any chart — they’re all in my head.

Alethea Mshar’s son, Ben.
Alethea’s son, Ben.

Many health care professionals have learned this secret and readily tap into the wealth of information I’m eager to provide. To you, the ones who listen, I thank you. My son is more than a list of diagnoses, and you get that. With your medical expertise and my parenting expertise, we can provide exceptional care for my child, maximizing outcomes and well-being.

I want you to hear how valuable your open minds and adaptability are and how very much we appreciate you. You are truly a blessing to us, and you make office visits and medical procedures streamlined for us. You provide the highest level of care when you team up with us.

Some health care professionals persist in a mentality that suggests that their education and experience trump mine. You sometimes outright disagree, which I actually appreciate because then we can dialogue and work through the differences. It’s when you nod to my face and then do things your own way that I feel you undermine care. It’s those times that we need to bring to light.

I want you to know I can tell you the best place to start an IV, exactly how he reacts to numerous medicines, and which ones work best and which ones have less desirable effects. When you think you know better, it can cause frustration, loss of trust and adverse effects, and I almost always find out.

So, dear medical professional, I want you to understand that your power and credibility can multiply exponentially when you work with your patients and their families. I want you to know we’re longing to share our wealth of knowledge with you and to receive more knowledge from you.

When we team up together, we can obtain ideal outcomes for Benjamin and many other complex patients like him.

Follow this journey on Ben’s Writing, Running Mom.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected]. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

 


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