What does it feel like to be 18 and diagnosed with myeloproliferative neoplasm? Emily shares some of the frustrations we can all relate to.
I have an MPN which is also known as myeloproliferative neoplasm. If we break down the words they give a pretty good working definition.
Myelo – From the Greek Muelos which means marrow
Proliferative/Proliferation – to grow or multiply by rapidly producing new tissue
Neoplasm – an abnormal growth of body tissue
So basically, the bone marrow produces lots and lots of cells that do not belong there. That is my basic working definition of a myeloproliferative neoplasm.
MPNs are invisible illnesses. There really are not many outward signs that show that those of us who live with it are 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, it 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 eye roll here).
We all have good days and bad, but for the invisibly ill, including those with myeloproliferative neoplasm, 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 do this, 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, 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, or suffering with a headache? It 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 now, 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.
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