If you’ve been sick, chances are there are things you wish you had said or would love to say to your doctor, things like thank you… or please help me. If you’re the parent of a sick child or a professional working with young people who have serious health conditions, you know there’s more below the surface of their experience — things that young people might have thought about and then forgotten, or things they haven’t quite had the words or the courage to express. Of course, the five ideas below are only a short list and we know there are MANY more, some that others will connect with and maybe even some that are unique to your challenge. If you see yourself or someone you love in the following ideas, consider bringing them up with your doctor, parent, counselor or good friend. These things you wish you could say – why not say them?

1. My body is only one side of my challenge

A doctor’s job is to treat your body, but your illness doesn’t stop there. The things that you’ve been through and even the treatments used to fight your illness are a lot to deal with. The hidden side of your illness is what it does to your mind and your spirit. Telling your doctor about these other challenges can be a step toward getting help.

2. It’s not “all in my head”

Sometimes illnesses are hard to see and some can even be hard to find with scans and tests. When a doctor can’t find your illness, sometimes it can be hard for a doctor to believe it exists. Part of this disbelief is a way to make the doctor feel better about not being able to do anything. But it doesn’t matter if your illness shows up on film or in your blood – if your symptoms are real to you, then they’re real.

3. I need to have a life outside illness

Your doctor sees you in one narrow situation – as a young person with a condition. And it’s the doctor’s job to manage this condition. But sometimes the way doctors suggest managing a condition doesn’t work with a patient’s life outside the hospital. It’s worth talking to your doctor about the things that matter to you outside your illness, and how you can work together to make sure you can still do these things during treatment.

4. I know what’s going on

When a doctor sees a new patient, he or she makes a quick calculation: How much should the patient know and what language should the doctor use to explain what’s going on? Especially if you’ve been living with your condition for a while, you might know as much or even more about it than your doctor. When he or she uses preschool language to explain things, it can make you feel like you’re not being taken seriously. Consider telling your doctor about your experience. You can be an informed partner in your care.

5. I don’t understand

On the other hand, there are times when doctors expect you to understand things that are way beyond your experience. Understanding your condition can help you manage it – physically, mentally, and emotionally. And it’s your right to understand what’s going on with your body! If you don’t understand what your doctor is saying, ask him or her to stop and try again.

For all of the things that doctors know, there are hundreds and hundreds more that they do not – these five and so many more! But the only way they can know these things is if you actually choose to speak up. Sometimes it’s hard, but next time you’re with your doctor, try saying one of these things you wish you could say. Then watch how openness and honesty can transform your appointment.

Garth Sundem

Garth Sundem is a parent, husband, GeekDad and author of books including “Real Real Kids, Real Stories, Real Change”. Find him at www.garthsundem.com.


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