My invisible chronic illness is never really invisible

I have multiple chronic illnesses, and technically they’re all “invisible” chronic illnesses, but to me they always feel visible.

Ok, I admit that a stranger might not notice anything at first glance, but someone who knows me well should see the signs.  I feel like they’re incredibly obvious.  I don’t use a cane or a wheelchair or any other aide, but the signs still scream out.  Sometimes it’s a tiny limp, or a grimace when something hurts.  My face could be flushed or pale.  It could be the way I lay my hands in my lap, palm up with the fingers curled, in a very unnatural way, but the only way that won’t cause excruciating pain.  There’s the way I might be sitting in a chair, and when I cross my legs I have to use my hands to pick up one leg and move it over the other.  How could people miss these signs?

And then, when all else fails, there’s always my eyes.  I admit, some days are worse than others.  Some days my eyes might not betray anything, or maybe there will only be a hint.  But then there are the other days….

Yesterday was exhausting.  It was stressful and happy, fun and tiring.  By the end, though, I was fatigued and every muscle hurt – I’d overdone it.  If I had thought about it, I would have expected to look bad, but why would I think about it?  It never crossed my mind until I was getting ready for bed.  I went into the bathroom, stood in front of the sink to brush my teeth, and did a double-take when I looked in the mirror.  I looked that bad.  My skin was burned and dry, my shoulders were hunched and sagging at the same time somehow, my hair was sticking out in all directions.  But my eyes.  My eyes showed it all.

My eyes were sad.  They were a bit puffy and swollen, so they weren’t open all the way.  One was less open than the other, which doesn’t happen unless I feel this bad.  The lids were extra wrinkled.  They were glassy.  They were just wrong.

Logically I understand how these “little” things can be overlooked by someone who is not watching for them.  I get that.  And at the same time, I feel like my body is shouting out the signs: LOOK HERE!  SHE’S REALLY SICK!  IT’S NOT INVISIBLE AT ALL!  But then, it’s never truly invisible to someone who’s really looking, is it?

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10 Responses to My invisible chronic illness is never really invisible

  1. anet37 says:

    Maybe some of the people just don’t see you often enough to realize what the signs are, or they are trying to be tactful. But yes, some of your signs sound like real giveaways – I don’t remember seeing anyone lift one leg up to cross their legs.

    It is amazing what people don’t notice. It is always nice to have some sympathy and understanding

    Annette

  2. rachelmeeks says:

    Amen! I always feel like it’s obvious that I’m sick (I especially related to having to pick up your legs to cross them) but my family is veeery slow on the uptake. :/

    • chronicrants says:

      With family and close friends, sometimes I tell them what signs to watch for so they’ll know. Have you tried that at all? Has it worked?

      • rachelmeeks says:

        A little…. I should try a little more though. I tend to clam up when I try to, it’s probably unclear…. but actually sitting down and having an intentional talk about just that is probably long overdue. I can picture having that talk with my husband, but with my parents and sisters…… oy. It seems like a big challenge, to say the least.

      • chronicrants says:

        Good luck! My only advice is to start with the easiest people and work your way up. It does get easier, and you figure out better wording the more you do it. I hope it helps!

  3. painfighter says:

    I totally agree. I have subtle things that show my pain from fibromyalgia. Today I’m got a hitch in my gait as my hips are soooooo tight and painful, my legs kind of get stuck as I’m walking. I also have bad TMJ and sometimes my jaw and neck pop so loudly my coworker can here it in her cubicle — over the music we play! But usually, all my disease symptoms are invisible. I wrote about this too. http://painfighter.wordpress.com/2012/08/14/fibromyalgias-invisible-face/

    • chronicrants says:

      Like you said in your post, to most people, seeing is believing. I think that’s why some people choose to ignore the signs: so they don’t have to believe it. And some don’t believe it because they really don’t see it. Too bad we can’t give all of society a collective education on “invisible” illnesses.

  4. When it comes to my chronic pain as well as my mom’s, the eyes are a dead giveaway. Her and I are able to perfectly gauge the extent of one another’s pain by how our eyes look. We also often wonder how it seems so easily missed by so many. By the way, thank you for your comment on my blog, I’m glad that it lead me to your blog!

    • chronicrants says:

      Yes, it really is all about the eyes. It’s good you guys can read each other so well. And funny thing, someone else’s comment led me to a blog, and a comment on that one led me to your blog… it’s a small cyber world 🙂

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