But You Don't Look Sick...

I think for the majority of people stricken with an invisible chronic illness, one of the things they hate to hear the most from the "healthy" peeps is, "But you don't look sick!"  It seems to be a major bone of contention to many people, like myself, who negotiate every minute of every day, awake and asleep, with a body fraught with pain, inflammation, confusion, and chaos.  Most who become indignant at others who simply don't see the suffering, are just wanting some validation for the long and lonely war they are forging with their body day in and day out.  I, personally, have never been highly offended by a friend, stranger, loved one, doctor (ok, maybe I get offended by the doctors) who try to tell me my outward shell is holding up pretty good.  I understand most of them are just trying to find some words of comfort and encouragement to someone facing an unexplainable battle that they haven't lived themselves.

My point?  My point is that I see both sides of the fence.  After deciding to put on make up, or just roll out of bed and get out in the sunshine, I appreciate knowing that others don't think I look like the death warmed up version of myself that I almost always feel at any given moment.  I also have had many times when I feel like I can barely keep it together, despite my best efforts, so a simple "Hey, you don't look so bad" often leaves me feeling like "Gee, thanks!  Could you minimize my illness any more?"  Two valid sides of one simple statement but how do you get to the mutually respectable meeting place?  Well, I think Team No One Understands My Illness is doing a great job at express how much this statement is unfavored in the chronically ill world.  It ranks tops on many "Don't Tell Me This Shit" lists that permeate blogs, websites, and even tshirts.  I relate...I totally do...I ain't gonna lie.  BUT, sometimes there's another way to look at things.  Sometimes, exposing yourself and your weaknesses brings about better compassion and understanding to what is so many times a scary and difficult condition for others to understand.  Here's what I mean...

I have menoPOTS, a self proclaimed term combining my surgical menopause with hyperadrenergenic Postural Orthostatic Tachycardia Syndrome.  I also have, Hashimoto's thyroid disease, neurally mediated syncope (NCS), psoriasis, GERD and all the rest that comes with these crappy conditions.  I am very sick.  I am healthier than some with POTS, but definitely not as well as some.  I have been suffering for over 3 years now and work between 30-60% of my former capacity.  Mostly, I'm around 45% of my previous capabilities.  I look great when I go out, if I do say so myself.  But I also look sick.  The above picture is me right after I passed out from walking 1/2 a mile outside today.  I look like I have the flu.  I spend most of the time looking like that.  When I don't, it means I worked hard to hide the bags, dark circles, skin rashes, bruises, and blood pooling that often accompany my body these days.

Instead of being upset, I welcome those telling me "But you don't look sick!" That's because I've changed my attitude about it awhile ago. I'm an open book and explain my condition to anyone who will listen or read about it.  I work hard to own the conditions I have without submitting completely to them defining who I am.  I struggle constantly with all of the above, but now when people tell me I don't look sick, I often reply with one of the following:

• Thanks!  This is my first day out in 2 weeks!
• Well that's good! I almost fainted in the shower so I'm glad it doesn't show!
• Thank you!  If I could only feel that way I'd be stoked!
• I don't look like an Olympic sprinter either, but I can't seem to get my heart rate to understand that!
• Thanks! That's because I spent 6 hours getting ready.  I'm glad it's paid off!
• Awesome! I'm glad you haven't noticed my beet red hands and feet yet!

And when I come home, or feel really low, or defeated, or overwhelmed, or exhausted, I open up the laptop and I blog and attempt to educate about my illnesses.  If we, as a chronically ill community, do not positively educate, then how do we expect anyone else to know and understand what it's like to suffer in silence?   Especially in a healthy looking body.