Support for Those Living with Adrenal Insufficiency

Growing up with Adrenal Insufficiency

Growing up with Adrenal Insufficiency 

Alyssa_Leight_headshotI was diagnosed with adrenal insufficiency, when I was seven years old. All I remember about that time is going to the doctor a lot and having to get my blood drawn, which like any kid, I detested. I was extremely lucky to have parents determined to get me the best treatment, allowing me to see the best pediatric endocrinologist who specialized in adrenal insufficiency. My mother even started a non-profit organization to help other families affected by adrenal insufficiency. However, all this meant I understood my condition, the symptoms, and the issues better than most kids. I was constantly surrounded by reminders that I suffered from a genetic disease, which to me, was a constant reminder that I was different, that there was something wrong with me.

As I grew older, I began to hide the fact that I had adrenal insufficiency. I would make up a lie when people would ask about my medic-alert bracelet, or go in to the bathroom when I had to take my medicine at a friend’s house. I didn’t want to be seen as the sick kid, the one with problems. This self-consciousness expanded when I got into middle school and began to understand the details associated with adrenal insufficiency: some, which I had been affected by, like early puberty and some only related to the classical form of the disease.

The idea that my friends would associate me with these symptoms horrified me. I began to hide myself even more. But when I was 13, it all changed. I went with my family to Los Angeles for a adrenal insufficiency conference and I met a girl my age, who also had adrenal insufficiency. She had brought a big group of her friends to the conference and was openly speaking to them about the condition. To my surprise, they didn’t care! They were extremely supportive and excited to be learning about her. Seeing that girl be so open and honest with her friends made me realize that I could be too. I had nothing to be ashamed of and my friends would be my friends, no matter what. I went home and immediately began explaining adrenal insufficiency to my friends, even advocating for the cause. I learned that having adrenal insufficiency didn’t change their opinions of me. Being open about my condition allowed me to become a more confident and proud person. Now whenever anyone asks me about adrenal insufficiency, I take the chance to educate them. I have accepted that adrenal insufficiency is an integral part of who I am and I embrace it.

If it had not been for the chance to meet that girl in LA, I would have never realized that I can be open about having adrenal insufficiency . Talking to another person with adrenal insufficiency and hearing their perspective, their story, and their advice can change your life. It has changed mine. That is why I wanted to get involved with Women with adrenal insufficiency, a private discussion board that allows adult women with adrenal insufficiency to post their thoughts, questions, and information. It enables the passing of advice and support from a community who truly understands what each individual is going through. The group has connected me with women of all ages, learning from their experiences, and sharing my own to help them in return. It is amazing the effect a community of voices can have and Women with adrenal insufficiency has made an impact, not only on my life, but on the lives of every person with whom I share the board.


To contact Alyssa about her Women with adrenal insufficiency group please send her an e-mail.

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