5 Things I’d Tell Someone Recently Diagnosed With a Chronic Illness


First of all, welcome to the family. Although I’m not sure of the exact path you took to become part of the “broken adrenal glands club,” I would like to extend to you the warmest welcome.

As someone who has been living with primary adrenal insufficiency (PAI) for a little bit, I would like to share five things I wish someone had told me immediately following my diagnosis:

1. It’s OK to be scared.

You have just been diagnosed with a rare disease that has no cure. The treatment also requires quite a deal of self management. It’s OK to be scared. It’s OK to feel completely overwhelmed. It’s not OK to panic. As hard as it may sound, try to view this diagnosis as a gift. With a name, there is knowledge. With knowledge, there is treatment. With treatment, there is life. Focus on the fact that you’re alive.

Amber Nicole the mighty.1-001
The doctor’s original notes as he explained the adrenal glands to Amber Nicole and her mom during her initial diagnosis in May 2005.

2. You will probably gain weight.

Please don’t ever try to manipulate your medicine just so you can drop a few pounds. This weight gain is good. Yes, you will now need to focus more on a healthy life style. But please don’t ever view the steroids you take as the enemy. These steroids give you life. A larger number on the scale is well worth the price of remaining alive.

Amber Nicole’s cat standing on six pairs of pants that no longer fit her due to weight gain.
Amber Nicole’s cat standing on six pairs of pants that no longer fit her due to weight gain.

3. Your social group will change.

Yes, you will probably lose “friends.” Yes, it will appear as if your social circle is drastically diminished. It’s OK to let them go. Those that stick by your side during this journey are worth so much more. It’s much better to have a smaller group of people who are unbelievably understanding and loyal than a larger group of people who abandon you during your time of greatest need.

Amber Nicole celebrated her birthday with friends and Big Tex in 2014.
Amber Nicole celebrated her birthday with friends and Big Tex in 2014.

4. You’re not a failure.

One of the first things your doctor might have told you is that it’s still possible to live a “normal life,” whatever that means. They may explain that if you just take your medicine as prescribed, your disease will be well managed. Well, flares still happen, and sometimes they’re completely out of your control. Forgive yourself. Every hospital visit, every ER run, every sickness and every stress dose provides an opportunity for you to learn and adapt so you’ll be better prepared for the next adventure.

An adrenal crisis triggered by food poisoning in August 2014.
An adrenal crisis triggered by food poisoning in August 2014.

5. You’re not alone.

Yes, you have just been diagnosed with a rare disease that even the experts don’t fully understand. However, it doesn’t mean you’re alone in this journey. Reach out to others who have walked a similar path. If you don’t know where to start, reach out to me. I can link you up with several different networks. Lean on us for support. Don’t further isolate yourself.

An adrenal insufficiency meet up from January 2014.
An adrenal insufficiency meet up from January 2014.

And again, welcome to the family. Let us continue to work together so that we can remain Clearly Alive.

Amber Nicole and her husband at her Decade of Diagnosis celebration.
Amber Nicole and her husband at her Decade of Diagnosis celebration.

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