Autoimmune: The Invisible Illness

Dear world,

On Saturday I mowed the grass.

Like millions of people across the United States, I mowed the grass.  It was the stupidest thing I’ve done in a long time.

Why, you might ask?  After all, you mowed the grass.  You had a drink of water, took a shower perhaps, and then went on about your day, right?  Nothing to it.  Just another chore that needed to be done, barely a blip in your day.

It’s not that simple for me.

If I told you that I took a 2 hour nap afterwards, you might think I was being lazy.  If I told you that I had to go rest again after putting the kids to bed, you might snort in disbelief.  And if I told you that I had to take naps for the next 2 days and struggled just to take a shower, you might think that I’m being overly dramatic.  After all, normal people have the stamina to get up and go.  Normal people can do their job and rest at the end of the day, feeling slightly tired but energized to have some free time.

I am the opposite of energized.  I am drained.  I am worn out.  I feel like a piece of cooked spaghetti noodle: limp, floppy, and collapsing.  I am autoimmune.

Autoimmune is one of those invisible illnesses that no one knows you have but everyone judges you for it.  I look lazy.  I look overweight.  I look like I need to get off my fat ass and go work out.  I wish I could.

Instead, I sit on the edge of the tub after a shower, feeling like I’m going to collapse on the floor.  The simple act of washing my hair is so tiring that I can barely hold my arms up.  I have to stop on the landing of the stairs to rest, because I can’t make it up the entire flight of stairs without resting.

I cannot exercise.  I can barely function.  On a bad day, I can barely stand up.

The problem is, I look normal.  No one can tell that I’m sick.  I don’t wear a big flashing sign on my shirt that screams “Debilitating Illness!”  I don’t usually even tell people that I have autoimmune diseases, unless I have to cancel a scheduled homeschool activity.

I wanted to cry this week because it really hit home how my illness affects the kids.

I took the kids out strawberry picking.  It was cloudy, and it looked like it might rain.  We wore our rain boots and headed out anyway, because I can’t go if it’s a beautiful sunny day.  Sunlight is a migraine trigger for me.

As luck would have it, the clouds broke and the sun shone while we picked.  I sighed – migraine.  I fought bravely and took my meds, but it kept coming like a freight train that just couldn’t slow down.  The next day the kids really wanted to go play outside.  I had to say no.  It was sunny, and I still had the vestiges of the last migraine waiting to pounce again.  The Engineer begged and pleaded, promised he would watch the other two, promised that I could sit in the garage and stay out of the sun.

I had to say no.

Let me just say, migraines are not just a headache.  They’re more.  They’re a nail driven into your head.  They’re an ever-tightening band of metal, grinding closer and closer to the bone.  They’re a sledgehammer, crashing into the side of your head over and over.  They’re a sea of roiling light and sound that drives deep into your skull and reverberates until you want to put your head down and howl “make it stop!”  They’re a boiling nausea that won’t go away, that threatens to brim over and make your head explode.   They are the worst hang-over you have ever had and more.

You might be wondering why I’m writing this.  Am I looking for sympathy?  Wanting to whine about how horrible my life is?

I’m telling you this for one reason: to help educate you.  So that the next time you see me, gray-faced and grimly struggling up the hill, you might not assume I’m just out of shape.  So the next time you talk to someone with a migraine you don’t suggest that they drink more water.  So that the next time your kid tells you they have no energy, you have some sympathy and understand a little more about what it’s like for them.

I’m telling you this because not all illnesses or disabilities are visible.

Sometimes, that person parking in the handicapped spot doesn’t look handicapped.  Sometimes we think people need to lose weight and their problems will be gone.  Sometimes we assume … and that’s always hurtful.  Worse, sometimes we say what we think.  We mutter snarky comments, or think nasty thoughts.  We judge.

Don’t.

Enjoy your health, but don’t forget that it’s a blessing.  A luxury.  And be kind to us: the spoonies with the invisible illness.

 

Thanks for listening, world.  I hope you always have your health.

 

I wrote a few tips on homeschooling with a chronic illness: go here to read more about how I make this whole thing work.

 

 

 

3 comments

  1. I am so sorry, I know this is a very hard disease. I am homeschooling my kids and doing my own business from home as a health coach. I have sucessfully helped some get lives back through natural nutritional healing. I would love to chat with you about things you have tried already and maybe some of the things I know to do are things you have not tried? Please let me know. I would love to help you improve the quality of life. Best to you today.

    Like

  2. Thank you for this. It’s the cloudy days and weather changes that are hardest for me. I have no control over my life. Be well.

    Like

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