What I Need From Pediatric Specialists Who Treat My Daughter With a Chronic Illness


This week we took my daughter, Maddie, to a new specialists. This was her 22nd specialist — 22 times we have sat in a specialist’s waiting room and have answered countless questions — 22 times. This number doesn’t even include dental/oral specialists, physical therapists and all the other extra doctors/practitioners we have seen over the years.

This time we left frustrated.

We left a little more resigned.

We left a little more heartbroken.

I realize there are many specialists out there doing a fantastic job and making a huge difference in the lives of children (Dr. Wasserman is our hero), but for every incredible doctor we have seen, we have a handful that have left scars.

Those scars hurt.

And when your whole life is about finding help for your child, having a specialist add to the wound is wrong. I truly don’t believe they realize what they are doing, so here are my wishes and recommendations:

1. My child has a name.

Please make an effort to talk to my child, not at my child. Even better, call her by name! The best way to make a connection is to find a few moments to get to know the patient. I realize you don’t need a connection, but we do!

2. Read the medical chart before entering the room.

If we are seeing you there is a reason! Please don’t ask us simple questions about diagnosis and referrals, we need to see you have read the chart and have made an effort. And really, when I have to explain what the primary diagnosis means or how to spell it, how can you expect me to trust anything else you have to say?

3. Honor the work we have made to get here.

You may not agree with what other doctors have done or said in the past. In fact, you may not see any reason for us being in your office, but please honor the work it has taken to be sitting in your exam room.

4. Listen.

When you ask a question, listen to the answer. Don’t assume you already have the answer. We can tell, and the best way to get a child to stop answering your questions is to show her you don’t really care what she has to say.

5. Don’t discount our experiences.

My child has been sick for 17 years. I have sat in countless doctor’s offices and have experienced more than you could ever imagine. My daughter is in the 1 percent club for side effects, allergies and illnesses. I’ve lived through the fine print! Please, don’t discount our experiences. Just because we don’t describe it exactly how you read it in the textbook doesn’t make it any less valid.

 

6. My child is more than a test result and quality of life matters.

I realize your care is driven by and dependent upon test results, but those things don’t mean much to me. I care about my child and the fact she is hurting. When tests results mean another dead-end, can you please offer more than, “well, at least we have another no.”

7. Do a thorough examination.

My daughter told you she had seen 21 other specialists for a reason… she didn’t like your vibe. You then proved it by doing a minimal examination. You proved you didn’t care right then.

8. Acknowledge you don’t have the answers.

After 17 years of consultations and testing, I don’t expect you to have the answers. I pray daily you do, but I don’t expect you to do so. So instead of brushing off symptoms and clinical observations, acknowledge you don’t know what to do! We will honor that and invite you to join the journey.

9. Imagine life in our shoes.

I’m wonder if being a speciality doctor gives you the feeling of being the smartest person in the room most days. Well, being the smartest person in the room may or may not be the case, but you could at least be empathic! I don’t imagine you have considered what it would be like if you had to go through life knowing no matter what you did, where you looked or who you talked to, you couldn’t make things better for your child!

10. Please leave me with hope.

At the end of a consultation leave us with hope. Please. Instead, after sitting through an almost two hour visit you said there was no reason for a follow up unless the blood work came back “icky.” Really? How hard would it have been to leave us with, “I’ll be in touch” or something tinged with hope? But to make a decision that we aren’t worth your time before even seeing test results? Really? Not nice.

From our perspective it seemed awfully easy for you to look at us and say the current medical research doesn’t have a unifying diagnosis for my daughter. But it’s not easy for us.

So what do we do? We continue to fight. We continue to research on our own. We continue. And we will continue to hope.

Because Maddie matters.

Editor’s note: This story has been published with permission from the author’s daughter.

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