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I No Longer Believe I Have to 'Do It All' With Adrenal Insufficiency

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Let’s get real for a minute about adrenal insufficiency. We are not talking about adrenal fatigue. Adrenal insufficiency is a condition that can only be diagnosed through a cortisol stimulation test (high or low dose). Once diagnosed, a person becomes steroid dependent and must take corticosteroids to stay alive.

In my case, it means that my body doesn’t produce enough cortisol to handle a burst of adrenaline. It’s a rare disease, so there’s not a lot of money in it. As of now, there’s no nifty monitors like they have for more common diagnoses. No Epi-pens to make the injection easier. Instead, it’s a fine-tuned guess based on situation, experience and symptoms. More stress typically equals more cortisol. A sudden burst of stress usually means to inject immediately, or I could die waiting for the oral steroids to metabolize.

This is what the needle and vial looks like:

the author holding up her injection of cortisol

“Draw it up and stab it in the thigh muscle because you’re a badass Heather,” I say to myself, “and that’s what you do when it’s your life.”

Then I make myself push the thick bruising liquid in to the muscle. Ouch.

Unfortunately, I’ve had to inject several times in the last month, and I live a fairly quiet life. There’s so much more I can say, but for now, I’ll leave it with the ridiculous needle.

And then, there’s the judgment.

People have all kinds of judgments when they see someone with adrenal insufficiency protecting their energy. It’s so sad because the condition demands a level of self-awareness that few could fathom. Instead, misunderstandings develop or gossip begins.

In my case, the are times even I must be clear that I’m not lazy, rude, antisocial, disheveled, conflict avoidant, or any other label that might come out of someone’s mouth if they didn’t know about my struggles with chronic illness.

Furthermore, I am not a needy person. In fact, I’m a warrior. Living with an invisible disability as a single mother in a world that often makes assumptions based only upon what can be observed, well, that’s serious strength.

I recently began a new art series exploring what it means to be a Warrior Woman, and I discovered — in the paint — that she is both aware of her vulnerabilities and capable of things unimaginable to most. Sound contradictory? Think of it similarly to child birth.

The author's collection of art

Having completed the Sentinels of my collection, I’m now exploring medical fragility in the context of what it means to be a Warrior Woman. Disability, life with chronic illness and invisible conditions all mean living with an awareness of finitude and the delicate nature of life. It means asking for help, and risking the judgment of others. Some give of their time freely, while others harbor resentment. I was once called a bottomless pit by someone very close to me. It was scarring, but I learned from the experience. From that point on, I made the empowered decision to only accept help from those capable of saying “no,” because then I could be sure that their “yes” was freely given. I was no longer going to be harmed by those that said “yes” only because they couldn’t say “no.”

As a single mom, I cannot live in isolation. I can, however, be very discerning about those whom I choose to include in my community. Transparency, authenticity, direct communication, love… these are all values we share. Furthermore, we place the needs of the children first. My friends often remind me that my willingness to ask for help is a gift to my daughter. She sees the community that unconditionally surrounds us, and she feels the depth of caring. As she grows into a young woman, she will have a healthy sense of what it means to be part of a community, something that’s increasingly lost to kids in an online world. Most importantly, she knows she doesn’t need to take care of me when I need help. Instead, we are surrounded by extraordinary men and women who make sure that we’re both squared away. That’s what community is for.

I never would have understood any of this until it happened to me.

My life was isolated, even in marriage, as I believed I had to do it all.

I no longer believe that, and my life is better as a result.

Originally published: November 22, 2019
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