When I Learned to be Kind to Myself With Adrenal Insufficiency


April marks Adrenal Insufficiency Awareness Month. I am always very open about the health events I go through. This is my most challenging and frustrating of my chronic illnesses. I will share with you what it is like to experience adrenal insufficiency. Interesting fact — John F. Kennedy had this, too!

Sitting on your kidneys are two triangular shaped objects called adrenal glands. They are the fancy top hats to your kidneys. In your brain is a pituitary gland that is the size of a peanut. It sends messages (not via text message) to your adrenals to make stress hormones. You may have heard “stress hormone” or “cortisol” on “Dr. Oz” in relation to stress leading to belly fat. While this may be confusing, cortisol is actually 100 percent necessary for a person to remain alive.

My body is like, “Awww heck no, I’m not making this stuff.” It was scary when I was diagnosed years ago because I couldn’t keep down nutrients and was slipping into a coma. I’ve never written an essay about it because it’s still pretty traumatic for me. Here’s the thing — cortisol is necessary to live and is also released when are under any kind of major body or emotional stress. Except mine doesn’t.

I have my daily dose of medication and have to stay deeply in tune with my body to know if I need more medication. If I somehow don’t notice, I start to become very ill. However, I know myself well. This makes any stress situation — medical or emotional — more challenging. There’s also no “one shoe fits all” protocol for everyone. What’s hard is so many paramedics and ER staff seem oblivious to this condition during the time when treatment is desperately needed. I’ve gone from barely able to be conscious to perking up with a simple injection. They just need to be informed to provide that injection, which is why awareness is crucial.

It can be a challenge at times when I look at what my peers are able to accomplish. It’s then that I remember that life is not a race. It’s hard when I lack the energy to do typical things that 20-somethings are known to do. I went through a phase of trying to push my body beyond its limits. I had a night or two of trying to go out to clubs or bars, only to realize that it made me sick and zapped my energy for weeks. It wasn’t worth it. I do love traveling, and this also tends to put a lot of stress on my body. I have learned to arrange flights to be as short in duration as possible. I make sure my first day upon arrival is a rest day.

In time, I’ve learned the only way to live successfully with a chronic illness is to be kind to yourself. I’ve been fortunate that my calling in life is writing, something easily accomplished while in bed. I will be taking part in an 8K walk in September for the hospital I attended as a child. It will take me months to build up to walk that far. It could be easy to spend days frustrated about what I used to be able to do — endless energy, staying up late, not needing rest days, or not having to worry about making sure I have pills with me at all times. Instead, I take pleasure in spending time with loved ones and pursuing my creative endeavors.

man and woman wearing aprons at painting studio
Sami painting with her boyfriend.

What’s challenging about adrenal insufficiency is that no case is the same. What I’m capable of, others may not be capable of at all. Some people are able to do far more than I am able to. There is no winner. It’s also easy for others to be confused that you are actually ill because you look so well. It’s frustrating when I or my fellow adrenal insufficiency cohorts are expected to be a representation of bravery just because we have an illness we didn’t choose to have. It’s important for all of us affected by adrenal insufficiency to take the time to grieve the life that was once lived before diagnosis, and it’s helpful to have the support of family and friends during this time.

It can be a very uncertain life, but can’t that really be said of all things in life? I keep going when I can. I stop and rest when I need to. People with illness are often told they are an inspiration just because they are disabled. I would only hope that the reason anyone would be inspired by my journey is because it encourages them to not feel like they are alone or that all of their hopes and dreams are crushed due to a diagnosis.

It sucks, I won’t lie. Even if my medication is fairly regulated, I do fatigue easier than my well friends. Running marathons probably isn’t in the cards for me, but I can take a fun Saturday painting with my boyfriend. It’s all about reshaping your life to focus on your capabilities versus be continually disappointed about what isn’t possible. I have a wonderful life and know that medical advances are always on the horizon. It’s always scary to talk about my health issues because I can easily pass for well. If I don’t speak up, who will?

Make no mistake… I’m not brave. I’m living!

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

*Sign up for our Chronic Illness Newsletter*

Related to Adrenal Insufficiency

To the Person Who Just Googled 'Adrenal Insufficiency'

So you or your loved one have been diagnosed with adrenal insufficiency? I guess I am correct or you wouldn’t be here, feeling the way you are, tapping away at Google and desperately trying to make sense of it all. This was me two years ago, and I wish I could have read this then. [...]

When I Run Out of ‘Spoons,’ This Is What My Day Is Like

I think every patient with a chronic illness knows Christine Miserandino’s “spoon theory.” People with chronic illness use spoons to describe how much energy we have. She was able to put into words what so many of us experience. But what happens when we run out of “spoons”? The experience varies for each of us. My alarm [...]

When Fighting to Get Well Feels Like Climbing a Mountain

Growing up, I had only ever seen people skiing on TV, during the Winter Olympics and while watching things like James Bond movies. I always hoped to try the sport out myself, and when I heard about a school ski trip (at 16 years of age) to Mt Ruapehu, in the North Island in New Zealand, I jumped at [...]

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 [...]