You don't LOOK sick!

By guest blogger Emily, who this week is blogging about Invisible Illness Week.

MPNs are "Invisible Illnesses". There really are not many outward signs that show we’re sick, but boy do we feel it. I don’t know about the rest of you, but , no matter how I look, sometimes I feel like I’ve been run over by a truck. 

However well-intended the phrase may be, saying “but you don’t LOOK sick…” to a sick person is pretty insulting. The implication being that we are faking it or that it’s not real. We don’t look sick? Well…what does sick look like, pray tell? Should we all be emaciated, bruised, or limping? What does it take to be acceptably sick? This may surprise some...but not all sick people look alike. Shocking, I'm sure. (insert snarky eye roll here).

We all have good days and bad, but for the Invisibly Ill, the bad days often outnumber the good. Most of us, though are obliged to put on the happy face and get on with things. If we didn’t, we wouldn’t be able get much done. I often feel like I am two completely different people; the one on the outside, who looks just fine, and deceives everyone around her; and the one on the inside who is exhausted, and battered and miserable. 

I learned to put on the happy face real quick when I got my first “Grown-Up Job”. I started at my office as the receptionist, so putting on the perky, bubbly personality, however fake it may have been, became a part of my daily life. Fatigued, sick, headache? Didn’t matter. That smile was plastered on. Inside I might have been cursing the phone for ringing, but I’d still thank you for calling and inquire how I could help. If you didn’t know I was sick…you would not know. There are days though when I just can’t fake it anymore, my fatigue catches up with me and knocks me out. On those days, I tend to hear that dreaded “but you don’t LOOK sick...”. Also on those days my sarcastic side will often think(or sometimes say, depending on the audience) "And you don't LOOK like a jerk..but I guess appearances can be deceiving, can't they?"

Believe me, I am neither wanting nor expecting sympathy.  Understanding would be wonderful though. Yes, it's true that we don't fit the picture in most people's heads of what sick should look like, but trust me while these illnesses may be invisible, we and our pain certainly are not. 

Please, think twice before telling us we don't fit your image.

MPN Research Foundation launches new website

This summer MPN Research Foundation has worked with our Web Committee and a professional web design and marketing team to create an updated website for the MPN Community. Our goal was to offer more access to information on the MPN world such as a Q & A with an MPN researcher, real patient stories, expanded disease information, MPN research news archives and more.


We hope you enjoy the fruits of our labor, and we want to know what you think. Please be sure and drop us a line with feedback at mwoehrle@mpnresearchfoundation.org.  And if you haven't already done so, remember to sign up for our upcoming Fall 2011 newsletter.