Patient Story: Lina

Lina Age: 18 Essential Thromobocythemia (ET)

"MPNs like ET are “Invisible Illnesses,” meaning 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."

During my freshman year of college, I was an “otherwise healthy” student, going about my life like anyone else. To look at me you would not know that there was a problem. Inside me was a different story. 

After visiting my general practitioner for some strange bruising on my arms, I was diagnosed with Essential Thrombocythemia (ET). 

MPNs like ET are “Invisible Illnesses,” meaning 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 very insulting. The implication being that we are faking, that it’s not real, or it’s in our heads. We don’t look sick? Well … what does sick look like, pray tell? Should all sick people 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 sarcastic eye roll here). True, you cannot see my cancer the way you could someone with breast cancer, or lymphoma. That does not make it less real, less painful or less important. 

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 do not, we will not 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 a 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 permanently plastered on. Inside I might have been cursing the phonefor ringing, but I’d still thank you for calling and inquire how I could help. If you didn’t know I was sick…I took great pains to make sure it stayed that way. There are days though when I just can’t fake it any more. 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?” 

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, the reality of our feelings is not.

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These represent first person accounts of real people living with Essential Thrombocythemia, Polycythemia Vera and Myelofibrosis. It does not represent the views or opinions of anyone associated with the MPN Research Foundation. Please consult your doctor before taking any action to manage your health.

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