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When Your Normal Doesn't Look Like Other People's Normal

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In high school, I was always just a little more tired than everyone around me. I wanted to be motivated to do things, but I really felt exhausted and overwhelmed most of the time. Other girls my age were playing basketball, swimming, running track, creating new student council activities, and raising money for the Spanish class trip to Mexico.

I was hoping there was nothing to do on the weekends, pushing myself to participate in speech and debate, and then sitting to rest between rounds every weekend, wondering why I was so dang tired. In college, I slept through most of my 8:00 and 9:00 classes.  I failed classes, dropped classes, and scrambled to pick up the slack and pull off some pretty remarkable GPA saves. It took 11 years of hard work to finish my four-year degree. Most people chalked it up to laziness. My family wasn’t sure I’d ever finish college, and quite honestly, I didn’t care for most of those years.

My motivation came in the form of pregnancy, and then stillbirth, which made me realize that if I wanted to do right for any future kids, I couldn’t be a shift leader at a fast food restaurant forever.  Don’t get me wrong, some people pull it off marvelously, but I have expensive tastes.  My brothers were also finishing their degrees, one of them a Ph.D., and I was feeling like I was less-than.

At the time, and for nearly 30 years, I wondered why I seemed to be more tired than everyone around me. I slept just as much, if not more than most kids my age. The only person I’d ever seen sleep later than me was my middle brother, who also happened to go at a million miles a minute the rest of the week. It made sense that he needed to play catch up on the weekends!

One of the realities I’m still struggling with is that I have delusions of grandeur, and almost no motivation to actually get anything done. I’m not lazy, though. Far from it. I have hopes and dreams and things I want to accomplish.  I want to start a local support group for chronic illnesses.  I want to reach out to doctors and speak to them about adrenal insufficiency and growth hormone deficiency.  I want to show that depression is sometimes a symptom of a bigger problem, and by finding the root cause, the depression may become easier to manage — not because it isn’t there, but because we can treat the mental and physical aspects of it. I want to change the world. But I also don’t want to get out of bed.

Most people wake up at least semi-refreshed every morning.  By the time they’ve showered and had their morning coffee, they’re ready to get the day started.  They can take on the universe! The kind of tired that they might feel is more related to the fact that they couldn’t put down their book last night, or they just had to finish a season of their show on Netflix and didn’t stop until midnight. Hey, I do that, too!

What I’m struggling to accept is that my normal isn’t your normal. Or hers.  Or his. Or theirs. Or anyone’s.

You have adrenal insufficiency, too?  Awesome (OK, not awesome, but kindred spirits here). Your normal isn’t the same as mine.  We spend so much time talking about how the media has skewed our image of beauty, but we don’t talk about how mainstream media affects our beliefs about our own lifestyles and health.

I did not choose this life.  When I was younger, I wanted to be a lot of things — an astronaut, a marine biologist, a teacher, a lawyer, the first woman president. I still want to do most of those things.  Though now, I think I’d make a really good doctor! But I do not have the motivation.  It’s an intrinsic flaw in my wiring. Legitimately. It’s listed as a symptom of growth hormone deficiency.  I’m pretty sure that replacing the growth hormone over the past year has improved this, but it’s also made worse by the extreme fatigue that haunts me daily.

My normal is more like lying in bed hollering to the children that they absolutely must get up for school right this second, even though Mommy is still largely immobile. My normal is hoping the kids at least moved the laundry so all I have to do is turn the dryer back on for its obnoxious second cycle. My normal is realizing I have some energy this afternoon, and rather than overdoing it and sacrificing the weekend, I can sit down and write again. Today it’s a blog; tomorrow it may be another novel.

Yes, another. I wrote a book.

You see, normal isn’t the same for anyone.  People without chronic illness experience normal differently than their peers as well.  The most important thing I have to remind myself is that comparing my day to yours is completely pointless and devaluing to both of us. Your life doesn’t have more or less worth or importance because you can or cannot do something that I also can or cannot do — and if you understand that concept, please come remind me once in a while! Today’s normal is different than tomorrow’s will be. It’s a reality I have to accept. I’m trying to take it one day at a time.

Getty image by Tenev Art.

Originally published: January 23, 2019
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