A Letter to the Newly Diagnosed with Adrenal Insuffiency

First of all, welcome to the family. Although I am not sure of the exact path you took to become part of the “broken adrenal glands club” (also known as Adrenal Insufficiency), I would like to extend to you the warmest welcome.

As someone who has been on this journey for a little bit, I would like to share five things that I wish someone had told me immediately following my diagnosis.

1. It is ok to be scared.

Original doctor’s notes as he explained the adrenal glands to my mom and I during my initial diagnosis of Adrenal Insufficiency. May 2005.

You have just been diagnosed with a rare disease that has no cure. The treatment also requires quite a deal of self management. It is ok to be scared. It is ok to feel completely overwhelmed. It is 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 are alive.

2. You will probably gain weight.

My cat standing on six pairs of pants that no longer fit me due to weight gain.

Please do not ever try to manipulate your medicine so that you can drop a few pounds. Please understand that your body was killing itself before you started your treatment. 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.

3. Your social group will change.

Chillin’ with Big Tex on my birthday in 2014.

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

4. You are not a failure.

Adrenal Crisis triggered by food poisoning. August 2014.

One of the first things your doctor might have told you is that it is still possible to live a “normal life,” whatever that means. Well, flares still happen and sometimes they are 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 that you will be better prepared for the next adventure.

5. You are not alone.

An Adrenal Insufficiency meet up from Jan 2014.

Yes, you have just been diagnosed with a rare disease that even the experts do not fully understand. However, that does not mean that you are alone in this journey. Reach out to others who have walked a similar path. Lean on us for support. Do not further isolate yourself.

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

My mom and I at my Decade of Diagnosis celebration in 2015.

This post originally appeared on The Mighty.