3 Things I Want the Parent of a Child With Adrenal Insufficiency to Know

My mom and I have been in your shoes. I remember the doctor coming in and hurriedly explaining adrenal insufficiency to us. No cure. Diseased for life. Steroid dependent. Be mindful of stress. And yet, I can live a “normal” life?

Over the years, we slowly realized we weren’t as isolated as we thought. We worked together and learned together. As someone who has lived with this diagnosis for more than a decade, I would like to share some insights with you.

1. Yes, cortisol controls a lot.

The production of cortisol within the adrenal glands influences so many things: heart rate, blood pressure, blood sugar. The ability to fall asleep. The ability to wake up. Balance, appetite, mood, weight, memory, emotions, electrolyte balance. And this seemingly overwhelming list isn’t even fully inclusive!

Doctors are still discovering more things that cortisol influences. But the good news is that as you work out a treatment plan tailored to your child, some of these seemingly unrelated symptoms should resolve themselves.

My mom and I had no idea that my frequent hospitalizations due to severe dehydration were a symptom of undiagnosed adrenal insufficiency.

2. Yes, this disease is worsened by stress.

Please don’t see this as an opportunity to try to isolate your child from any situation that might be considered stressful. Instead, work with them to teach them how to identify potentially stressful situations and practice steps to take to help reduce the overall stress load. Also, please keep in mind that not all stress is bad. Extremely happy and joyful moments can still be considered stress on the body, but it’s good stress.

Holding a baby tiger in Thailand is a good type of stress.

3. Yes, you will occasionally mess up.

And that will probably cause your child pain. Please forgive yourself. We forgive you. We know you’re trying your hardest, and we know this isn’t an easy disease to manage. Allow yourself grace. Use the lesson you learned today to make tomorrow better.

Amber Nicole.4 This is a note showing I had to use my emergency injection recently. A few years ago, a similar episode would have hospitalized me. — This is a note showing I had to use my emergency injection recently. A few years ago, a similar episode would have hospitalized me.

Every day, you will continue to discover new things that will help you and your child manage this disease better. Welcome them as learning opportunities. And as your child continues to grow, know that your role in helping manage this disease will continue to change and evolve. Over the years, my mom went from being the sole person managing my disease to allowing me to have full responsibility.

That being said, I know she is never more than a phone call away if I need her.

Follow this journey on Clearly Alive.

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